The Cancer Survivorship Journey: Models of Care, Disparities, Barriers, and Future Directions

Author(s):  
Michael T. Halpern ◽  
Mary S. McCabe ◽  
Mary Ann Burg

Although the number of long-term cancer survivors has increased substantially over past years, the journey of survivorship does not always include high-quality, patient-centered care. A variety of survivorship care models have evolved based on who provides this care, the survivor population, the site of care, and/or the capacity for delivering specific services. Other areas of survivorship care being explored include how long follow-up care is needed, application of a risk-based approach to survivorship care, and the role of the survivor in his or her own recovery. However, there is little evidence indicating whether any models improve clinical or patient-reported outcomes. A newer focus in survivorship care has included assessment of potential disparities; the sociodemographic characteristics of population subgroups associated with barriers to receiving high-quality cancer treatment may also affect the survivorship period. Developing policies and programs to address disparities in survivorship care is not simple, and examining how financial hardship affects cancer outcomes, reducing economic barriers to care, and increasing incorporation of patient-centered strategies may be important components. Here too, there is little evidence regarding the best strategies to address these disparities. Barriers to providing high-quality, patient-centered survivorship care include lack of evidence, lack of a trained survivorship workforce, lack of reimbursement structures/insurance coverage, and lack of a health care system that reduces fragmented care. Future research needs to focus on developing a survivorship care evidence base, exploring strategies to facilitate provision of survivorship care, and disseminating best survivorship care practices to diverse and international audiences.

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.


2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 48-48
Author(s):  
Holly Mead ◽  
Mandi Pratt-Chapman ◽  
Sean Cleary ◽  
Sarah Raskin

48 Background: With 15.5 million cancer survivors in the U.S., cancer is increasingly viewed as a chronic illness that requires systematic, coordinated care. Yet research has not determined what models of survivorship are most effective in providing high quality, patient-centered care. This study evaluates the quality of three models of cancer survivorship care using a newly developed patient-centered measure. Methods: We conducted a comparative effectiveness study with 32 cancer programs distributed across 3 distinct models of survivorship care: 1) Consultative Specialized Survivorship Clinic; 2) Longitudinal Specialized Survivorship Clinic; and 3) Oncology-Embedded Survivorship Clinic with Referrals. We developed the Patient-Prioritized Measure of High Quality Survivorship Care (PPM), a scale comprising 9 patient-prioritized components of survivorship care. We enrolled 991 survivors of breast, colorectal and prostate cancer across these programs and followed them over 6 months collecting self-reported data on quality of survivorship services. Results: Preliminary results suggest statistically significant differences across models of care for six PPM components. Model 1 is more likely than the other two models to provide a full spectrum of services (p=0.0001), mental health and social support (p<0.0001), and information and resources for patients in survivorship (p=0.0002). Model 2 is better than model 3 at providing a medical home (0.04), and outperforms both other models at coordinating care and transitions (p=0.0059). Both Models 1 and 2 are better than model 3 in ensuring productive patient-provider interactions (p=0.006). Conclusions: It appears that certain models of survivorship care are better at specific domains of patient-centered quality, suggesting cancer centers should consider their organizational context and their patients’ needs before committing to a particular model of care.


Author(s):  
Soterios Gyftopoulos ◽  
Adam Jacobs ◽  
Mohammad Samim

Abstract Patient-reported outcomes (PROs) provide an essential understanding of the impact a condition or treatment has on a patient, while complementing other, more traditional outcomes information like survival and time to symptom resolution. PROs have become increasingly important in medicine with the push toward patient-centered care. The creation of a PROs database within an institution or practice provides a way to collect, understand, and use this kind of patient feedback to inform quality improvement and develop the evidence base for medical decision-making and on a larger scale could potentially help determine national standards of care and treatment guidelines. This paper provides a first-hand account of our experience setting up an imaging-based PROs database at our institution and is organized into steps the reader can follow for creating a PROs database of their own. Given the limited use of PROs within both diagnostic and interventional radiology, we hope our paper stimulates a new interest among radiologists who may have never considered outcomes work in the past.


2021 ◽  
pp. 108482232110278
Author(s):  
Mary Curry Narayan ◽  
Robert Kevin Mallinson

Introduction. Home health patients, who are members of minority and vulnerable groups, suffer disparate outcomes. Patient-centered care (PCC) and culturally-competent care (CCC) aim to facilitate high-quality, equitable care. How home health nurses incorporate PCC and CCC principles into their assessment and care-planning practices has not been -investigated. This study answers the question, “ What is the process by which home health nurses develop their culture-sensitive/patient-centered assessment and care planning skills?” Methods. Home health nurses (n= 20) were recruited into this grounded theory study from agencies around the United States via flyers, websites, and contacts. We conducted in-depth recorded interviews using a semi-structured interview guide to ask questions about nurses’ assessment and care-planning practices, their understanding of CCC and PCC principles, and facilitators/barriers to CCC and PCC practice. Results. Participants primarily gained their CCC and PCC assessment and care-planning skills through a “seat of your pants,” trial-and-error process, with little educational or agency assistance. They combined caring, diverse patient experiences, and critical, creative self-reflection on their experiences to gradually learn helpful, though not optimal, CCC and PCC strategies. However, they reported numerous barriers that discouraged or distressed them in their quest to deliver culturally-competent and patient-centered care. Only a few nurses demonstrated the resilience to overcome these challenges creatively and happily. Conclusion. If we accept that patient-centered care and culturally competent care are key elements of high-quality, equitable care, this grounded theory may help home healthcare clinicians, administrators, educators, and policy-makers identify impact points for enhancing CS/PC practices.


Author(s):  
Victor Okunrintemi ◽  
Erica Spatz ◽  
Joseph Salami ◽  
Haider Warraich ◽  
Salim Virani ◽  
...  

Background: With recent enactment of Accountable Care Act, consumer reported patient-provider communication (PPC) assessed by Consumer Assessment of Health Plans Survey (CAHPS) in ambulatory settings is incorporated as a complementary value metric for patient-centered care of chronic conditions in pay-for-performance programs. In this study, we examine the relationship of PPC with select indicators of patient-centered care in a nationally representative adult US population with established atherosclerotic cardiovascular disease (ASCVD). Methods: The study population consisted of a nationally representative sample of 8223 individuals (age ≥ 18 years) representing 21.6 million with established ASCVD (self-reported or ICD-9 diagnosis) reporting a usual source of care in the 2010-2013 pooled Medical Expenditure Panel Survey (MEPS) cohort. Participants responded to questions from CAHPS that assess satisfaction with PPC (four-point response scale: never, sometimes, usually, always ) :(1) “How often providers show respect for what you had to say” (2) “How often health care providers listened carefully to you” (3) “How often health care providers explained things so you understood” (4) “How often health providers spent enough time with you” We developed a weighted PPC composite score, categorized as 1 ( never / sometimes ), 2 ( usually ), and 3 ( always ). Outcomes of interest were 1) patient reported outcomes (PRO): SF-12 physical/mental health status, 2) quality of care measures: statin and ASA use, 3) health-care resource utilization (HRU): Emergency room visits & hospital stays, 4) total annual and out of pocket healthcare expenditures (HCE). Results: As shown in the table, those with ASCVD reporting ineffective (never/sometimes) vs. effective PCC (always) were over 2-fold more likely to report poor PRO, 34% & 22% less likely to report statin and ASA use respectively, had a significantly greater HRU (OR≥ 2 ER visit: 1.40 [95% CI:1.09-1.80], OR≥ 2 hospitalization: 1.35 [95% CI:1.02-1.77], as well as an estimated $1,294 ($121-2468) higher annual HCE. Conclusion: This study reveals a strong relationship between patient-physician communication among those with established ASCVD with patient-reported outcomes, utilization of evidence based therapies, healthcare resource utilization and expenditures.


2021 ◽  
Vol 12 ◽  
Author(s):  
Sélim Benjamin Guessoum ◽  
Laelia Benoit ◽  
Sevan Minassian ◽  
Jasmina Mallet ◽  
Marie Rose Moro

Background: Culture can affect psychiatric disorders. Clinical Lycanthropy is a rare syndrome, described since Antiquity, within which the patient has the delusional belief of turning into a wolf. Little is known on its clinical or therapeutic correlates.Methods: We conducted a systematic review (PRISMA) on PubMed and Google Scholar, until January 2021. Case reports, data on neurobiological hypotheses, and cultural aspects were included. Language was not restricted to English.Results: Forty-three cases of clinical lycanthropy and kynanthropy (delusion of dog transformation) were identified. Associated diagnoses were: schizophrenia, psychotic depression, bipolar disorder, and other psychotic disorders. Antipsychotic medication may be an efficient treatment for this rare transnosographic syndrome. In case of depression or mania, the treatment included antidepressants or mood regulators. The neuroscientific hypotheses include the conception of clinical lycanthropy as a cenesthopathy, as a delusional misidentification of the self-syndrome, as impairments of sensory integration, as impairments of the belief evaluation system, and right hemisphere anomalies. Interestingly, there is a clinical overlap between clinical lycanthropy and other delusional misidentification syndromes. Clinical lycanthropy may be a culture-bound syndrome that happens in the context of Western cultures, myths, and stories on werewolves, and today's exposure to these narratives on cultural media such as the internet and the series. We suggest the necessity of a cultural approach for these patients' clinical assessment, and a narrative and patient-centered care.Conclusions: Psychiatric transtheoretical reflections are needed for complementaristic neurobiological and cultural approaches of complex delusional syndromes such as clinical lycanthropy. Future research should include integrative frameworks.


2018 ◽  
Author(s):  
Elissa R Weitzman ◽  
Kara M Magane ◽  
Lauren E Wisk

BACKGROUND Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful—gap areas. OBJECTIVE We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. METHODS Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children’s parents. Parents who viewed ARRs (n=111) were surveyed about the information’s perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. RESULTS Parental endorsement of the value of ARRs for understanding their child’s condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was “very valuable”). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). CONCLUSIONS Returning ARRs may foster a “virtuous cycle” of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child’s chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model.


Dementia ◽  
2017 ◽  
Vol 18 (5) ◽  
pp. 1858-1895 ◽  
Author(s):  
Catherine A Hebert ◽  
Kezia Scales

Background Dementia friendly initiatives share similarities with the age-friendly movement in a focus on active engagement and creating a good quality of life for older adults. Dementia friendly initiatives offer a welcoming optimistic narrative in dementia studies by embracing dignity, empowerment, and autonomy to enable well-being throughout the dementia trajectory. Purpose The purpose of this review is to explore the current science of dementia friendly initiatives, identify gaps, and inform future research. Method Quantitative, qualitative, and conceptual/theoretical peer-reviewed dementia friendly research literature were evaluated for their current evidence base and theoretical underpinnings. Results The dementia friendly initiatives research base is primarily qualitative and descriptive focused on environmental design, dementia awareness and education, and the development of dementia friendly communities. Person-centered care principles appear in dementia friendly initiatives centered in care settings. Strong interdisciplinary collaboration is present. Research is needed to determine the effect of dementia friendly initiatives on stakeholder-driven and community-based outcomes. Due to the contextual nature of dementia, the perspective of persons with dementia should be included as dementia friendly initiatives are implemented. Theory-based studies are needed to confirm dementia friendly initiative components and support rigorous evaluation. Dementia friendly initiatives broaden the lens from which dementia is viewed.


Author(s):  
Jennifer S. Temel ◽  
Laura A. Petrillo ◽  
Joseph A. Greer

The evidence base demonstrating the benefits of an early focus on palliative care for patients with serious cancers, including advanced lung cancer, is substantial. Early involvement of specialty-trained palliative care clinicians in the care of patients with advanced lung cancer improves patient-reported outcomes, such as quality of life, and health care delivery, including hospice utilization. Since the time that many of these palliative care trials were conducted, the paradigm of cancer care for many cancers, including lung cancer, has changed dramatically. The majority of patients with advanced lung cancer are now treated with immune checkpoint inhibitors or targeted therapies, both of which have had a significant impact on patient's experience and outcomes. With this changing landscape of lung cancer therapeutics, patients are facing new and different challenges, including dealing with novel side effect profiles and coping with greater uncertainty regarding their prognosis. Patients who are living longer with their advanced cancer also struggle with how to address survivorship issues, such as sexual health and exercise, and decision making about end-of-life care. Although palliative care clinicians remain well-suited to address these care needs, they may need to learn new skills to support patients treated with novel therapies. Additionally, as the experience of patients with advanced lung cancer is becoming more varied and individualized, palliative care research interventions and clinical programs should also be delivered in a patient-centered manner to best meet patient's needs and improve their outcomes. Tailored and technology-based palliative care interventions are promising strategies for delivering patient-centered palliative care.


Author(s):  
Robert Leone ◽  
Charles Walker ◽  
Linda Curry ◽  
Elizabeth Agee

Increasing numbers of patients are being treated for heart failure each year. One out of four of the heart failure patients who receives care in a hospital is readmitted to the hospital within 30 days of discharge. Effective discharge instruction is critical to prevent these patient readmissions. Co-production is a marketing concept whereby the customer is a partner in the delivery of a good or service. For example, a patient and nurse may partner to co-produce a patient-centered health regimen to improve patient outcomes. In this article we review the cost of treating heart failure patients and current strategies to decrease hospital readmissions for these patients along with the role of the nurse and the concept of co-producing health as related to heart failure patients. Next we describe our study assessing the degree to which discharge processes were co-produced on two hospital units having a preponderance of heart failure patients, and present our findings indicating minimal evidence of co-production. A discussion of our findings, along with clinical implications of these findings, recommendations for change, and suggestions for future research are offered. We conclude that standardized discharge plans lead to a mindset of ‘one size fits all,’ a mindset inconsistent with the recent call for patient-centered care. We offer co-production as a patient-centered strategy for customizing discharge teaching and improving health outcomes for heart failure patients.


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