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Patient Perspectives About Cancer Clinical Pathways and Care Coordination
Abstract
While health care leaders may ultimately want to create better care for patients, systemic goals can be at odds with individual patient needs. Before finalizing clinical pathways, patient needs must be intentionally assessed to ensure pathways that work for providers can also deliver flexible and effective patient care for the entire spectrum of patients and their families. Tools should encompass the entire patient experience, from ways to avoid cancer, how to obtain a diagnosis and biomarker testing, and participation in clinical trials, to treatment decisions, survivorship plans, and end-of-life support. This article discusses how patients feel through their cancer experience and suggests ways to incorporate important components like social determinants of health; diversity, equity, and inclusion strategies; and cost considerations so patients can live full lives.
Most people don’t know about clinical pathways (CPs) and most won’t care to learn about them after receiving a cancer diagnosis. While health care leaders may ultimately want to create better care for patients, systemic goals can be at odds with individual patient needs. Some CP leaders have even admitted that what has been missing from CP development is the patient’s perspective.1 Clearly, patient needs must be intentionally sought before finalizing CPs to ensure the pathways work for those they serve. Health systems and providers think very differently than actual patients do about the patient experience. A simple example illustrates these different interpretations when surgeons assert, “We got it all.”2
Most people want to avoid cancer, even when they don’t follow every recommendation. Tools like the National Comprehensive Cancer Control Program3 exist, but systems that passively promote messages via websites or mailings find little success compared to active programs like Project ECHO and the Three Fires Cancer Consortium.4,5
The Patient Perspective
Once someone is diagnosed with cancer, they become a “patient” who often feels like they have landed on a foreign planet without a roadmap, dictionary, or any type of survival training. Patient paths to cancer diagnoses can be long and checkered with misdiagnoses,6 leading to confusion and mistrust when they finally get to an oncology department. Many patients don’t know about molecular testing and the targeted therapies that may give them better odds at survival. Information on technology, terminology, and costly procedures are shared readily, yet patients may not hear about clinical trial options until after they’re on treatment, if at all. In addition, medical terminology can sound like a foreign language to nonexperts (Figure).
What patients really want to know is that they are not alone, what their treatment options and ramifications are, what to expect, and what happens if treatment doesn’t work. They also want a team that clearly cares about them and will coordinate their care with all their other providers. CPs should promote and support opportunities to explain these aspects to patients in plain language, including the value of clinical trial participation. In addition, medical terminology such as “the patient failed the treatment” often makes patients feel blamed instead of accurately placing blame on failed treatments, which discourages patients from sharing problems like side effects or other important information.7
The Promise of Precision Medicine
Patients also want to know that the promise of oncology precision medicine is now reality. That means biomarker testing, or molecular testing, should be available to all patients, especially as new variants and signatures emerge and new treatments are tested. For patients, awareness may be nonexistent unless testing is discussed plainly.8 Access for both initial and recurring diagnostic testing should also be included as research advances, which may help improve diagnosis rates for communities of color instead of allowing them to fall further behind.
A major issue that has an easy fix is giving patients the context they need to quickly process their situation, choices, and some of the most important decisions in their lives. CPs can provide better context by integrating tools like clinical decision support (CDS) and shared decision-making (SDM) methods, such as SHARE from the Agency for Healthcare Research and Quality (AHRQ), into electronic health records (EHRs).9-13 Problem-based CPs ensure the flexibility that is needed to support individual patients.14,15
In addition, integration of patient-reported outcomes (PROs) is also imperative, as evidenced in a 2017 study that showed a 5-month overall survival advantage in patients with cancer when PROs were taken into consideration.16 CPs that include patient preferences, PROs, and quality-of-life measures may also show more successful results.17 Survivorship plans that connect oncology and primary care help growing numbers of survivors, and tools that help facilitate serious illness and end-of-life conversation should also be used when appropriate.18,19
Barriers
Flexibility in CPs is key since not all patients are the same—they include every race, ethnicity, culture, age, and geographic location; and they experience systemic inequities that impact workforces, EHRs, biospecimen collections, clinical trials, accessibility, and, most importantly, quality of care.20-24 However, one thing is universal: All patients with cancer experience uncertainty whether they are newly diagnosed, in active treatment, in remission, or living with a metastatic condition.25 Fortunately, there are tools and additional resources for health systems and providers that can be incorporated into CPs to offer better care for all patients.26-29 For example, the Comprehensive Geriatric Assessment should be included to help individualize care for older patients.
Another barrier that can be difficult to discuss is providers who categorize patients through arbitrary filters and implicit biases when determining treatments and whether to broach clinical trial discussions.30 CPs should include diversity, equity, and inclusion (DEI) initiatives such as the joint program from the Association of Community Cancer Centers (ACCC) and the American Society of Clinical Oncology (ASCO) that includes a Site Self-Assessment and a Just Ask Training Program.31,32
In addition, financial toxicity must be discussed with every patient because it has been shown to significantly lower overall survival.33,34 Even after the US Affordable Care Act, 30 million people are uninsured (9%-10%) and another 88 million (43%, aged 18-64 years) are considered underinsured.35,36 This means at least 35% of the US population cannot afford today’s cancer treatments. There is no excuse, however, to withhold options from patients. Patient-centered CPs can help patients find resources within institutions and communities and identify assistance, such as the Patient Advocate Foundation and Triage Cancer.37-39 It is also time to stop predatory debt collection, euphemistically called “extraordinary collection actions,” which can bankrupt patients and families.40,41
Social determinants of health (SDOH), which include all the facets of life that patients must deal with,42 should also be addressed by CPs. Lifestyles, support systems, insurance status, work requirements, family and community responsibilities, cultures, transportation needs, and spirituality all affect patients’ abilities to complete treatments. For example, connecting patient survivorship plans with internal community engagement and outreach departments and external programs like Health Accelerator Plans can help build a better roadmap for patients.43 Patient-oriented information, like the Checklist for Improving Patient Communication and agenda-setting tips from the American Academy of Family Physicians, should also be included in CPs.44-46
Finally, all patients with cancer should be asked to participate in relevant clinical trials during treatment discussions.47 It is impossible to tell if someone will be interested by the way they look or from assumptions about finances. Trial-matching resources can help providers discuss clinical trial options. Sponsors must also expand eligibility using Food and Drug Administration improvements to help increase diverse representation in clinical trials so that they offer more value to all patients with cancer.48-50 Digital infrastructure and tools that were successfully implemented during COVID-19 also need to remain—they offer desirable flexibility for patients.51 Digital technologies (eg, phone applications) that gather more data from patients must also extend direct benefits for each patient.52 Co-creation of these technologies with patients makes them understandable and usable.53,54
Tips on agenda setting for meetings with patients.
The American Academy of Family Physicians (AAFP) has provided five key considerations when meeting with patients to explain the information they need and stay mindful of time45:
1. Create a complete list of concerns from the patient and provider.
2. Estimate time requirements to discuss each item on the list.
3. Rank the concerns in order of priority.
4. Plan follow-up visits to cover the topics not discussed during the initial meeting.
5. Confirm the patient has understood everything.
Conclusion
CPs offer cost-effective options from a health system perspective but can fail to integrate individual patient preferences or SDOH factors that may influence the final treatment decision. Patient situations should be recognized and resolved through flexible CPs that assist providers with useful, health-literate tools and techniques that meet patient needs by addressing precision diagnostics, reflex biomarker testing, and targeted therapy; supporting SDM, PROs, CDS, and clinical trial matching; and offering survivorship plans after treatment.55 With these steps, health systems can truly provide the right care to each patient at the right time.
Author Information
Authors: Deborah E. Collyar
Affiliations: Patient Advocates in Research, San Francisco, CA
Address correspondence to:
Deborah E. Collyar
3687 Silver Oak Pl
Danville, CA 94506
Phone: (925) 260-1006
Email: deborah@tumortime.com
Disclosures: The author discloses no financial or other conflicts of interest.
References
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