Advances in Patient-Centered Care for Women Diagnosed with Breast Cancer - PowerPoint Presentation

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Advances in Patient-Centered Care for Women Diagnosed with Breast Cancer

Sharon Manne, PhDProfessor of MedicineDivision of Medical Oncology, Section of Population ScienceRutgers Robert Wood Johnson Medical SchoolAssociate Director, Cancer Prevention, Control, and Population ScienceRutgers CINJ

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History of Patient-Centered Care

Institute of Medicine’s 2001 report raises concerns about the quality of care for patients and defines patient-centeredness as a key component of care qualityPatient-centeredness has been defined as 1 of 6 key elements of high quality careInitial concern raised by providers: Patient-centered care is too focused on individual needs because it focuses on individuals rather than populations and evidence-based medicine is based on “population” level/aggregated dataThis concern was not considered valid because a good outcome must be defined as what is meaningful and important to the individual patient Epstein & Street, 2011 Guyatt et al, 2004

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What Is Patient-Centered Care?

IOM (Institute of Medicine) defines it as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” There are many models and definitions, but some common elementsCharacterized by the quality of personal, professional, and organizational relationshipsFocusing less on physician authority over care and more on fostering partnership, compassion, and collaboration between provider & system and patient in care provisionEmpowering patients to take an active role in their care Fostering high quality care

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Basic Tenets

Valuing peopleTreating people with dignity and respect by being aware of and supporting personal perspectives, values, beliefs and preferences. Listening to each other and working in partnership to design and deliver services.AutonomyThe provision of choice and subsequent respect for choices made. Balancing rights, risks and responsibilities. Optimizing a person’s control through the sharing of power and decision-making. Maximizing independence by building on individual strengths, interest and abilitiesLife experienceSupporting the sense of self by understanding the importance of a person’s past, their present-day experience, and their hopes for the future.Understanding relationships and fostering themCollaborative relationships between the service provider and service user and their caregivers and between staffing levels. Social connectedness through the local community through opportunities to engage in meaningful activities.EnvironmentOrganizational values underpinned by person-centered principles. Responsive support that is responsive to individual needs. A planned, organization-wide effort to individual and organizational learning.

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Eight Principles of Patient-Centered Care

1. Respect patient values, preferences, and expressed needsInvolve patients in decision-making, recognizing they are individuals with their own unique values and preferencesTreat patients with dignity, respect, and sensitivity to his/her cultural values and autonomyCompassionate care that fosters relationship between physician and patient2. Coordinate and integrate care to alleviate vulnerability Coordination of clinical care, ancillary, and support servicesCoordination of front-line patient care3. Provide information and educationInformation on clinical status, progress and prognosisInformation on processes of careInformation to facilitate autonomy, self-care, and health Enhance Physical comfort

4. Enhance physical comfort

Pain

management

Assistance with activities and daily living needs

Hospital surroundings and environment

Picker Institute’s Eigh

t Principals of Patient Centered Care (1993)

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Eight Principles, continued

5. Provide emotional support and alleviate fear and anxietyScreen for and address support needs6. Involve family and friends in careRecognize their needs and provide accommodations Involve family and close friends in decision makingSupport family members as caregiver7. Provide continuity and transitionUnderstandable, detailed information regarding medications, physical limitations, dietary needs, etc. Coordinate and plan ongoing treatment and services after dischargeProvide information regarding access to clinical, social, physical and financial support on a continuing basis & ongoing patient feedback to providers on care quality8. Provide access to carePatients need to know they can access care when it is needed. Focusing mainly on ambulatory care, the following areas were of importance to the patient:Access to the location of hospitals, clinics and physician officesAvailability of transportation, ease of scheduling appointmentsAccessibility to specialty services when a referral is made

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Measuring Patient-Centeredness Can Be Challenging

Is not only defined as patient satisfaction with the clinician or care delivered, but must include key aspects of patient needs and concernsShould be tied to the delivery of the care and hopefully to positive disease outcomesExample: Patient does not want to take an antibiotic and expresses this preference; provider agrees, despite his/her best judgment on outcome of the infection that caused the need Patient would rate the care provided highly, but the clinician would not be providing standard of care to patient and patient’s medical outcome is compromisedObviously patient-centered care is not only about the decision but perhaps about how the clinician prepares the patient for the decision (pros and cons)Must take both patient and clinician perspectives into account as well as evidence-based health care deliveryCan be difficult to ascertain key components of “patient-centeredness” as they vary across diseases, treatment situations, & settingsShort and long-term patient-centered outcomes may differ (short-term satisfaction vs long-term QOL)****Must be tailored to patient needs, the disease and treatment context

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Patient-Centered Short-Term Outcomes

Improving communication. Communication quality between patient and provider during end of life care for breast cancer via a provider communication interventionPatient rating of provider communicationFostering more informed decisions. Greater knowledge & value-concordant decisions for contralateral prophylactic mastectomy in average risk patientsKnowledge & decisional conflictEnhancing symptom management. Want to ensure that patient nausea & anxiety are being assessed and addressed during the course of chemotherapyPROMIS measure of anxiety and nauseaFacilitating Survivorship Care Transition. More challenging and best to focus on specific issue (e.g., symptoms, medication adherence) and reasons why patient may have an issue

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Today’s Presentation

Medical Advances that impact Patient-Centered CareAdvances in Care Delivery Advances in Risk Factors for Diagnosis and Survival and Effective methods to Reduce RiskConsideration of Cultural differences and Vulnerable Populations

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Medical Advances

Advance #1: Big Data Drives Precision Oncology: Genetically-targeted treatments using molecular tumor subtypesDiscovery of biomarkers: Estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor 2 (HER2) All patients are required to have estrogen receptor (ER) and HER2 status determinedBiomarker testing has led to anti-hormone therapy (aromatase inhibitors) for early stage Breast Cancer (BC)HER2 testing has led to first-line anti-hormonal therapy for Hormone receptor positive tumors for metastatic BC rather than chemotherapy, reducing late effectsHER2 positive BC (an aggressive tumor) led to HER2 targeted therapies (Trastuzumab) as targeted treatmentCombined & sequential treatments have enhanced survival for metastatic BCMulti-gene molecular targets provides information about prognosis and efficacy of systemic therapies Oncotype DX assay, one of several gene assays for ER-positive, HER2

negative

tumors,

provides

recurrence probability, indicates benefit of adjuvant chemo, and

may guide neo-adjuvant

treatments for those with larger tumors

3) Advances in Genetic Risk Assessment

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Medical Advances

Advance #2: Improved Surgical Management and RadiologyReduction in extent of axillary surgery using sentinel node biopsyLess lymphedema, better arm function, & better QOLBreast Reconstruction (BR) with better aesthetic outcomes and fewer complications/morbiditiesBR confers benefits to psychosexual adjustment Implants are more widely performed, but autologous reconstruction has improved cosmetic outcomes & reduced complication ratesAdvances in outcomes of autologous BR: Free flaps (DIEP) have less morbidity and a natural lookRadiographic imaging shows areas where tissue can be used for autologous BR that is well-vascularized to reduce complicationsPersonalized Radiation using Oncotype DX recurrence score selects patients who may not need radiation after surgery or patients who may be resistant to radiation and not benefit from it

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Medical Advances

Advance #3: Genetic Risk Assessment and modelingMultiplex assessment of 100 cancer-related genes is now less costly and fast turnaround Additional rare genetic variants can add to risk modelAdditional risk factors such as high breast density have been identified and may lead to ascertainment of women who may require Breast MRI and/or more frequent surveillance

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Advances in Care Delivery

Advance #1: Care CoordinationComplexity of cancer care, the fractured nature of care, care transitions, use of multiple specialists, and navigating large health systems without integrated electronic records create poorer quality care and less adherence Coordination: Organizing patient care activities and sharing information to foster shared care and appropriate service delivery (Hudson et al., 2016)Both during and after cancer treatment Coordinating treatment is most crucial for care delivery of:Poor, underserved, and uninsured patients Patients with significant comorbid needs whose care of those conditions is suspended during cancer careSurvivors who experience fragmented transitions after cancer care when there is little or no communication between oncology & primary care Cancer care coordinators or patient navigators (PN) have been added to care delivery systems to foster access to care, coordination of care after diagnosis, and foster survivorship careComplex issue due to health care system, health care setting (academic vs community), provider (PCP, oncologist), and patient factors that impact care coordination and defining short and long term outcomes

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How do we define effective care coordination?

Difficult to define as there are many moving targets at many levels and most studies do not engage more than one care coordination strategy, and focus only on the PN and not coordinating with provider teamsFew randomized clinical trials have assessed these programs, and many programs assess broad outcomes such as quality of life, care satisfaction, and distress that are not tied to the coordination goals During treatment: Meta-analysis review of Patient Navigation Programs (Tho & Ang, 2016) Nurse-led PN were rated for methodological soundnessOnly 3 studies were considered in analysisResults: Improved satisfaction, No difference in QOL or distress

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Can we develop and test better care coordination models?

Care coordination for complex cancer survivors in safety-net system (Craddock Lee et al., 2018) Tests different care coordination strategies: Using EHR registry to identify comorbiditiesReviews comorbidities and identifies primarycare needs; Connects to PCP; Creates a survivorship care summary & gives to patient & PCP2) Co-locating Nurse practitioner trained in care coordination within the care teamReviews Step 1, coordinates care, handles primary care during cancer treatment, provides survivorship care plan, educates patient about self-management and surveillance needs, & coordinates specialty referrals3)

Enhancing teamwork via coaching

Nurse coordinator in the PCP practice meets with coach to learn how to assess patients and manage care transitions

Outcomes

:

Patient

perception of

care

Patient self-efficacy

Provider interviews

Meet care guidelines (chart review)

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Advance #2: Survivorship Care Plans

IOM recommends Survivorship Care Plans (SCP) (2006)Care plans should be given to all patients & include past treatments and future surveillance recommendationsRandomized trials of SCPs have failed to demonstrate the effectiveness of survivorship care plansResearch on SCPsWeak when used alone (Jacobsen et al, 2018)Poor quality research Advances in Care Delivery

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Research on the impact of SCP’s is weak

Jacobsen et al., 2018, JCO

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What can we safely conclude about SCPs?

Provision alone is not sufficientImplementation must include ways to foster patient knowledge, self-management skills and efficacy, target disease and patient specific care management issues, address emotional support needs, and facilitate patient and caregiver/family confidence & ability to manage survivorship careImplementation must include primary care providers but provision alone is also not sufficientSCP will be more cost effective and likely result in greater patient-centeredness to stratify risk factors and patient needs using medical risk & symptom profiles. Focus resources on high-need populations (patients on hormone therapy or have complications)It will be more effective to tailor the survivorship care plan for each care setting, evaluate ways to facilitate implementation of the survivorship care plan in clinical practice, and selecting appropriate outcomes to assess desired what matters to patient and HCP

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Advances in Care Delivery

Advance #3: Building Providers’ Patient-centered Relationship SkillsMembers of the oncology care team receive standardized communication skills trainingContent varies and level of assessment of skill acquisition and usage variesSample Course @ MSKCC In person, one day, Introductory Lecture & Modules30-min presentation that provides a rationale for the module ’s topic, reviews current literature on the topic, presents recommended communication approach to the module, and shows demonstration videos that illustrates provider using this approach with a simulated patient. Participant is given a printed booklet on the module

90-min small group role play session that allows the participants to take turns practicing

during an encounter with simulated patients (SPs).

Participants

reflect

upon their interaction with the SP

after their

role play, receive

feedback

from

their peers/group members

and facilitators

, and review their performance

on

video playback.

Facilitated

by a communication skills specialist

Assessment during training but is not translated to clinical setting

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Relationship-building Skills: Does Communication Skills Training improve quality of care?

There are many possible outcomes!!Provider communication skills Information gathering skills, such as open questions, leading questions, facilitation, clarifying and summarizing Discovering the patient perspective such as eliciting concerns Explaining and planning skills such as giving the appropriate information, checking understanding, and negotiating procedures and future

arrangements Supportive

,

building relationship

skills

,

such as empathy, responding to

emotions & offering

support

Undesirable

outcomes

, including blocking

behaviors

such as interruptions

and

false

reassurances, and providing

facts

Provider burn out

Patient-rated

:

Patient

health

status, distress, QOL,

Perception of HCP’s communication

skills

& trust

Family-rated

:

Perception

of HCP’s communication

skills & trust

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Relationship-building Skills: Does Communication Skills Training (CST) improve quality of care

Cochrane meta analysis (2017) included 11 RCTs outpatient settings Eleven studies compared CST with no CST intervention, three studies compared the effect of a follow-up CST intervention after initial CST training, and one study compared two types of CST The types of CST courses evaluated were diverse Study participants included oncologists, residents, other doctors, nurses, and a mixed team of HCPs 10 studies in meta-analyses Results aren’t promising! HCPs in the intervention groups were more likely to:Use open questions in the post-intervention interviews than the control groupShow empathy towards their patientsNo statistically significant differences in communication skills except for the subgroup of participant interviews with simulated patients, where the intervention group was significantly less likely to present 'facts only' compared with the control group There were no significant differences between the groups in patient satisfaction or patient perception of the HCPs communication skills.

CONCLUSION: CST improves some communication skills related to information gathering and

support. We cannot determine

whether the effects of CST are sustained over time, whether consolidation sessions are necessary, and which types of CST programs are most likely to

work

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Conclusions about Provider-Patient Communication

Most programs focus on general and basic relationship and care provision skills such as showing empathy, asking questions, & providing information Some programs, such as MSKCC’s, have developed specialized modules for different skills and situation (delivering bad news & end of life)Few programs assess patient expectations and needs and whether care was concordant with themTargeting actual needs in specific situations:Was there a discussion about the medical decision?Were the benefits and barriers discussed with the patient?Did the oncologist assess patient needs, questions, & concerns?

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Advances in Care Delivery

Advance #4: Enhancing Patient Engagement in Cancer Care 1. The Internet!! Patient-Centered Medical Home Portal allows patient access to her information, allows provider to track patient data and surveillance, allows for e-prescribing rather than patient asking for script –Goal is to empower patient with information May foster better communication between patient and clinicianMay improve care delivery (eg., making own appts, waiting time)Has not been used for Oncology care very muchTransforming practices can be challenging as not only doctor is involved in care delivery and engaging patient in care is keyMost studies just look at clinical integration of EMR for care providers Example: EMR integrated into the clinicians’ workflow and designed as a care pathway information system to provide real-time support to the coordination of the entirety of care processes involving all the care personnelThe large majority of the waiting-time indicators decreased over time

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2. Shared Decision-making

and Decision SupportPrecision Oncology creates complex decisions Overwhelming amount of information Uncertainty about “right” course of care given options have similar outcomes (prophylactic mastectomy in BRCA1/2 carriersInformation is always given in a short period of time in a very distressing situation where patients have little opportunity to process and follow up with questions for the care teamShared decision models allow for more interaction and collaboration with care teamDecision support’s goals are to enhance knowledge, foster value-concordant decisions, and enhance patient-centered communication, and ultimately improve QOL and satisfaction with outcome

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Decision Support Tools During Breast Cancer Treatment

Katz et al (2018): I-Can Decide provides patient information about surgical, chemotherapy, and radiation treatment pathways, trade-offs, and outcomes based on personalized patient informationImproves knowledge about treatment optionsPatients felt it did not address emotional concerns that were hampering decision so next version will address emotionsPhysicians not engaged enough in shared decision-making so they are developing a physician-facing componentManne et al. (2018): B-Sure provides support to sporadic risk patients considering contralateral prophylactic mastectomy Provides information about treatment options, clarifies patient motivations and goals, and fosters decisions concordant with goals

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Shared Decision-making & Decision support: Challenges

There are now evidence-based decision support aids (e.g., BRCA test/surgical decision support counseling)None have been disseminated into non-research settingsNone have evidence they can be successfully integrated into ongoing clinical care and the best case scenario is that they are hosted on the cancer center’s website or a professional organization’s websiteAre they used by patients?Do physicians steer patients to them? Are they sustainable given ongoing medical advances?Few have both physician and patient-facing aspects

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Advance #5: Patient-Reported Outcomes (PRO)

Monitor treatment effects, complications, functional status, symptoms, and psychological states across the cancer continuum Distress & treatment-related symptoms (pain, fatigue, hot flashes, toxicities)Identifying crucial time points to assess (how often, when)(transitions)Choosing cut-offs Linking assessments with interventions (if we assess it, we must act) Identifying at-risk populations who may benefit from assistance before care beginsPRO data collection has become increasingly significant for health care deliveryCenters for Medicare and Medicaid Services, other payers, & FDA use PROs to evaluate interventions

Part of Meaningful Use requirements Nationwide

PRO data collection efforts can be used to monitor and improve care and patient

outcomes

Advances in Care Delivery

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Electronic PROs are integrated into Care Delivery

Electronic systems offer quantification of symptoms, standardization, and longitudinal tracking of patients over timeIdeal electronic PRO (ePRO) platform Clinically-relevant, validated, and reliable and would offer patient usabilityGives automated responses to and from patients, has scheduling functionality, and sends real-time alerts to personnel and patients Clinical interfaces should be easy to read and integrated into the electronic medical recordClinical trials have established ePRO systems as an effective method of providing information, which aids improved patient outcomes, including reduced health resource utilization and longer time on therapy

Large cohort studies of PROMIS measures Quantify “cut points” and reference values so we know cancer patients at risk

Q

uantify cancer burden and lead to incentivizing use and guide care

Jensen et al. (2017) NCI registry study of 5284 cancer patients measures pain, fatigue, sleep disturbance, anxiety, depression, physical function, social function, & cognitive function

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Advance

#6: Including Families in Cancer Care Care provision is collaborative with familyPart of being patient centered is focusing on patient’s familyRelationships are impacted by cancerGustafson (2018) Comprehensive Health Enhancement Support System that gave caregivers access to CHESS, an online support system or CHESS+ Clinician Report which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severityResults indicate that was more symptom improvement in CHESS-CR & the caregiver had less negative mood Advances in Care Delivery

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Advances in Risk Factors for Diagnosis and Survival and Effective methods to Reduce

Risk Advance #1: Identification of lifestyle factors contributing to breast cancer risk has resulted in the incorporation of weight management into clinical recommendationsWeight & weight gainBeing overweight or obese is associated with increased risk for post-menopausal breast cancer and recurrence as well as all cause mortalityWeight gain in adult life is associated with higher risk for breast cancer Post-Diagnosis weight gain of more than 10% body weight is associated with higher mortality from all causes Physical ActivityVigorous physical activity decreases risk of pre- and post-menopausal breast cancerPhysical activity is not associated with mortality in women over 65Recommendation: Weight management and moderate to intense physical activity

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Advance #2: Developing Effective Risk-Reduction

InterventionsDiet intervention: Thompson et al. (2015)Compares low fat or low carbohydrate diet intervention consisting of a 42 day cycle of menus and recipes. Weight loss counseling and anthropometric assessment were provided at monthly clinic visits In comparison to the non-intervention control, both intervention arms achieved significant decreases in body weight (12.5%), body fat (27.5%), waist circumference (9.5%), and hip circumference (7.8%) (all p < 0.001) with minimal effects on lean mass (1.3% decrease). Loss of body weight and fat mass was rapid and substantial irrespective of dietary approach when a structured program was providedPhysical Activity and Diet intervention: Kwiatkowski et al. (2017)Group-based behavioral intervention with telephone counseling and tailored newsletters to support weight loss or a less intensive control intervention At 12 months, mean weight loss was 6.0% of initial weight in the intervention group and 1.5% in the control group (P<.001). At 24 months, mean weight loss in the intervention and control groups was 3.7% and 1.3% (P<.001). Favorable effects of the intervention on physical activity and blood pressure were observed. The weight loss intervention was more effective among women older than 55 years than among younger women.Advances in Risk Factors for Diagnosis and Survival and Effective methods to Reduce Risk

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Consideration of Vulnerable Populations

and Cultural Factors Low literacy, low level of education, and patients who do not speak English have more difficulty comprehending medical information, report less satisfaction with care, lower quality of life, and experience higher morbidity riskAccess to care (rural, poverty) is a growing issue in cancer prevention and careFinancial burden of care is a growing issue, even among insured and underinsured, and contributes to poor outcomesDisparities are growing with regard to the above factors – less about race, more related to literacy, education, and access to careThe complexity of genetic information and choices to be made makes patient-centered care even more importantNavigation and care coordination programs must target these populations first Some attention must be paid to elderly cancer survivors

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Mammography Screening Disparities in Our State

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Conclusions

Oncology Care providers are more aware of patient-centered care as a goal, but there is not a lot of training or incentive for providers to implement this care Time constraints on oncologists make relationship-building, explanation of care options, and overall shared models of care provision challenging We are in the early stages of how PROs might be used to guide and improve care Patient portals – Nice idea, not clear if they improve patient-centerednessWe have a number of decision support aids but they are not really made available to patients and some don’t include providersAccess to advanced/precision oncology care will become a huge issueFinancial Burden is a huge issue particularly with high level treatments that may come with added costsPatient- and family-centered end of life care and geriatric oncology are looming issues as our population of older cancer patients & survivors growsTransition back to Primary Care remains a challenge