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Summary in Thirty Seconds
The patient voice is vital to understanding how to guide and build the best possible tools to provide outstanding treatments tailored to a person’s needs.
While many healthcare providers have a clear view of the ideal journey for a patient with cancer, the reality of the journey rarely meets this ideal.
To better understand the patient voice, it’s important to realize the typical patient’s unawareness of cancer diagnostic, treatment, testing, and trial options.
A framework to understand the patient voice is the cancer experience map, which shows stages in the journey, common overall themes for cancer patients, concerns at key treatment points, strategies for patient engagement, and targeted behavioral goals.
Understanding landmarks on a patient’s cancer journey and the emotions experienced can help healthcare clinicians and those conducting clinical trials tailor their approaches to best meet the needs of people with cancer.
The Patient Voice
The patient voice is vital to understanding how to guide and build the best possible tools to provide outstanding treatments tailored to a person’s needs. The patient voice describes a “compilation of many patients’ expressed feelings, concerns, and experiences during an illness.”[1] Oftentimes, researchers and developers don’t carefully incorporate the patient voice as they focus their efforts on doing what is comfortable and known to them and/or innovating new therapies or clinical trials for people with cancer. Nor do many clinicians consider the unfamiliarity of most newly diagnosed people with the clinical terminology and jargon used in oncology and clinical trials.
Many healthcare providers have a clear view of what they want for a patient with cancer and how that journey will ideally unfold. However, the National Cancer Policy Board has concluded that for many people with cancer, there is a “chasm” between what could be construed as the “ideal and the reality of their experience with cancer care.”[2]
To better understand the reality of that patient voice, it’s important to ask what a person with cancer experiences. Oftentimes, patients are unaware of the specifics of cancer, including treatment, testing, and trial options that they will face. A framework to better understand the patient voice is the cancer experience map, which shows stages in the journey, common overall themes for cancer patients, concerns at key treatment points, strategies for patient engagement, and targeted behavioral goals.[3]
Various landmarks on the cancer patient pathway have been suggested and each point has specific and relevant issues and emotions associated with it. A brief version incorporating a number of patient experience maps[4], [5], [6] includes:
Initial symptom(s)—skin change, fatigue, weight change, lump/thickening, etc.
Questioning, concern
Initial appointment with Primary Care Provider (PCP)—physical exam, bloodwork, discussion
Anticipation, possibly fear, possibly hope instilled from PCP
Referral to a specialist—patient search of provider background/experience/credentials/reviews
Fear, concern, frustration with the wait, trying to stay hopeful
Initial diagnostic testing—imaging, bloodwork, biopsy
Fear, anxiety, uncertainty
Diagnosis and staging—internet search, social media discussion, search for literature about cancer, disclosure to family/friends
Shock, crisis, uncertainty, feeling betrayed by body, questioning the need for a second opinion
Treatment option research and treatment plan development—internet search, talking to friends/family, discussion with other healthcare providers; preparation and planning
Uncertainty, overwhelmed, conflicting recommendations, possibly hope depending on specific diagnostic parameters
Treatment/clinical trial—surgery/recovery, radiation, medication—main and side effects
Uncertainty, anxiety about effectiveness and side effects, physical pain, concern about costs, health, impact on psychosocial network, hope, supported by family/loved ones
Follow-up: Remission—blood tests, imaging, physical exams
Uncertainty, fear, psychosocial adjustment, anxiety about relapse
Follow-up: Relapse—additional treatment and/or palliative care
Questioning, concern, resignation, possibly supported by family/loved ones
Landmarks Guiding Treatment and Trials
Understanding these “landmarks” on a patient’s cancer journey and the emotions these people experience can help not only treating healthcare clinicians but also those conducting clinical trials to tailor their approaches to best meet the needs of people with cancer. Lack of communication has been identified as the largest problem identified by patients, caregivers, and physicians.[7] Thus, it is vital to make good communication a priority in the patient journey. The more “collaborative” the relationship is between patients/caregivers and the healthcare team, the better not only the experience of treatment will be, but the better the outcome of such treatment can be.[8]
[1] J Med Internet Res. 2015 May; 17(5): e132 [2] Health Equity. 2019; 3(1): 403–408 [3] ibid [4] ibid [5] PLOS ONE 15(12): e0244355 [6] Patient Empowerment Network | Empowerment For Patients (powerfulpatients.org) [7] Health Equity. 2019; 3(1): 403–408 [8] Curr Med Res Opin. 2013 Nov;29(11):1475-82