Abstract
Background:
Consuming educational content, adhering to treatment plans and managing symptoms and side-effects can be overwhelming to new oncology patients.
Objective:
The purpose of this study is to engage patients in conceptualization of enhanced clinic processes and digital health tools to support awareness and use of integrative oncology services.
Patient Involvement:
We engaged patients in participatory design to understand lived experiences surrounding use of integrative oncology services during and after conventional cancer treatment.
Methods:
Ten participatory design sessions were held with individual participants. Sessions began with patient story telling regarding diagnosis and paths to awareness and use of integrative oncology services. We then reviewed prototype mobile app screens to solicit feedback regarding digital health functionality to support patient navigation of symptom-alleviating options.
Results:
Oncology patients are active participants in the management of symptoms and side effects. Patients who utilize yoga, acupuncture, and massage report a need for earlier patient education about these services. Patients express interest in digital health tools to match symptoms to options for relief, provide access to searchable information, and facilitate streamlined access to in-person and remote services.
Discussion:
Patients co-produce wellbeing by seeking solutions to daily challenges and consuming educational content. Clinics can collaborate with patients to identify high priority needs and challenges.
Practical Value:
Active collaboration with patients is needed to identify unmet needs and guide development of clinic processes and digital health tools to enhance awareness and use of IO services in conventional cancer care.
Funding:
The principal investigator was supported by the U.S. Agency for Healthcare Research and Quality (AHRQ K12HS026370). The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ. The sponsor had no role in the study design, data collection, analysis, report writing, or decision to submit for publication.
Keywords: Patient education, Patient engagement, Human-Centered Design, Integrative Oncology
1. Introduction
Cancer symptoms and side effects of treatment including pain, nausea, vomiting, depression, and anxiety can diminish patients’ quality of life.[1] Symptoms continue after treatment, as 30% of patients report at least five moderate-to-severe unmet physical, emotional, and psychosocial needs at the end of treatment and six months later.[2] An increasing number of patients utilize integrative oncology (IO) services to alleviate symptoms and improve well-being.[3] Evidence-informed IO services used to improve quality of life, clinical outcomes, and empower patients to become active participants in care [4] include mind body practices, natural products, and lifestyle modifications.[5, 6]
Major cancer centers provide IO services alongside conventional cancer treatment [7] as benefits include improved survival rates [8] and reductions in pain, anxiety, fatigue, and psychological distress.[9–11] However, widespread use depends on effective patient education and communication between patients and providers. An understanding of patients’ lived experiences is needed to foster innovation in service delivery and design of digital health tools to support patient education regarding symptom-alleviating options, and streamlined access to remote and in-person IO services.
Purpose
The purpose of this study is to engage patients in generating recommendations for enhanced clinic education processes and digital health tools to support awareness and use of IO services.
2. Methods
This study employs generative design research guided by a participatory mindset [12] wherein participants are recognized as experts in the experience of living with cancer and play an active role in knowledge sharing, idea generation, and collaborative development of solution concepts. The study team was comprised of two nurses, three IO practitioners, and a patient representative. In preparation for this study, members of the study team applied theoretical and empirical knowledge of patient needs to design mobile app screen prototypes, known as wireframes [13] for use as discussion prompts [14] during participatory design sessions [15–17]. Nurse members of the study team who possess expertise in human-centered design facilitated sessions comprised of storytelling, semi-structured interviews, and conceptual wireframe review. Sessions were held virtually due to a concurrent pandemic. The OHSU institutional review board approved the study.
In early stages of a project to improve patient education, awareness, and use of IO services, it is imperative to understand patients’ current lived experiences. A convenience sample was recruited through informational fliers placed in multiple oncology clinics in the Portland, Oregon metropolitan region. Recruitment criteria included a cancer diagnosis of any type and prior use of one or more IO services during conventional cancer treatment. Participants were e-mailed a study information sheet and web meeting invitation. Participants not familiar with web conferencing were offered a practice web meeting session.
Ten participatory design sessions were held with individual participants (one participant per session) between August 8 and October 15, 2020. Participants ranged in age from 40 to 78 years and 80% were Caucasian, which is consistent with regional demographics. Fifty percent lived alone, 60% were female, and 50% had a breast cancer diagnosis. Additional cancer types include leukemia, sarcoma, colon cancer, and Hodgkin’s lymphoma. Fifty percent were in active treatment, and 50% were in a post-active care across four conventional clinics and multiple IO service provider locations (Supplementary Material Table 1). All participants reported access to a tablet or smartphone. Most participants had experience using one or more mobile apps for health-related reasons. Sample sizes are typically small in generative design research focused on eliciting needs, desires, and experiences from representative persons at the outset of a design process [12]. Ten participatory design sessions were deemed sufficient given observed repetition across participants’ concerns, desires, and ideas for enhanced awareness and use of IO services.
At the outset of each session, a facilitator (DW, RK) reviewed the study information sheet and obtained verbal consent to participate in this study. Participants were provided an exemplary list of mind and body practices to ensure a shared understanding of the term “integrative oncology services.” All participants stayed through the full participatory design session. Participants were invited to share the story of their cancer journey including how they became aware of IO options, and their experiences using IO services and discussing them with their providers. Participants naturally answered many questions from the study’s semi-structured interview guide (Supplementary Material Table 2) as they told their story. Facilitators asked remaining questions as prompts during storytelling or as follow-up questions. Next, participants were introduced to graphical wireframes depicting electronic functionality designed to provide education regarding symptoms, relevant IO symptom alleviating options, and tracking of symptoms and goals related to wellbeing (Supplementary Material Figures 1–2). As participants reviewed conceptual wireframes, they were invited to describe how they envisioned future use of prototyped functionality, identify desirable and undesirable characteristics, and offer recommendations for desired functionality. Two study team members (SC, CS) took notes to ensure patient perspectives, recommendations and desires were fully captured during each session. Notes were consolidated for analysis in Quirkos [18] qualitative software. Familiarization with qualitative data was achieved through repeated reading of patient stories and session notes. Three team members (DW, RK, AR) independently coded qualitative data. Template analysis [19] was used to code data with a priori codes based on interview topics and wireframe functionality, with option to add new topics [19] introduced by participants. Both deductive and inductive logic was employed to synthesize qualitative data into themes and synthesized participant recommendations. Coding discrepancies were resolved through discussion and consensus-building deliberation. A patient member of the study team (CS) checked coded data against notes and edited synthesized participant recommendations to reflect the aggregate first-person voice of the patient.
3. Results
All participants described the management of troublesome symptoms, side effects, functional and emotional challenges during cancer care. Three overarching themes emerged: 1) Active participation in care, 2) Awareness of IO services, and 3) Utilization of IO services.
Active Participation in Care
All participants reported high motivation to take action to feel better and promote healing. Participants reported taking on many new tasks after diagnosis, including information management, decision making, sharing information between providers, scheduling and receiving care. One participant noted, “It’s like taking on a new full-time job – learning about my condition, going to appointments, making decisions, and doing what I need to do to stay alive.” Participants acknowledged limitations of energy and time and utilized informal support networks to augment personal contributions to care. A majority of participants described a supportive, informal network of family and friends, and also a smaller group of trusted individuals who searched for symptom-alleviating options, created lists of questions, took notes during clinic visits, and managed many aspects of daily life. Participants consistently expressed a desire for educational content and resource suggestions to empower them to participate in their treatment and recovery. Nearly all participants indicated that the “Information Center” is the first place they would go in using prototype mobile app screens.
Awareness of IO Services
Participants reported receiving relief of symptoms including pain, nausea, lymphedema, anxiety, depression and many other concerns using IO services. Participants who utilized yoga, acupuncture, and massage report that they wish they had known about these services earlier in their cancer care and suggest earlier education for other patients (Table 1). Nearly all participants described a circuitous path to awareness and expressed frustration regarding providers’ lack of self-care recommendations. Most participants described learning about IO services through web searches or discussions with friends and family. Several participants reported access to a nurse navigator and social worker but reported not knowing to ask these persons about IO services at the outset of treatment. Other paths to awareness included chance discussions with other patients and suggestions from extended social networks, such as a spouse’s medical provider.
Table 1:
Patients experience a circuitous path to awareness of IO services
| Theme: Awareness of IO Services | |
|---|---|
| Subthemes | Synthesized recommendations for greater personal support |
| – Self-discovery of IO services – Focused and frequent sharing of tailored IO information – Digital support for preparation for care |
In the clinic: – I need to hear that anxiety, depression, fear of the unknown, self-doubt, and negative thoughts are common, and that services exist to help with these symptoms – I want symptom-related education to be relevant to me and my diagnosis – I need early education about supportive services, provider recommendations for specific services, and reminders about services when I experience symptoms – I would like to receive information in a way that is less overwhelming and I want content to be tailored by my care team so that I have confidence that it applies to me in my unique situation Between visits, I would use mobile technology to: – Have a single place to look up symptoms and options for finding relief – Learn about vetted meditation, yoga, and other IO-related mobile apps – Look up vetted IO service providers and other community resources |
Participants noted that treatment affected their memory and expressed a need for reminders about IO services when they experienced symptoms. Participants recommended that it would be helpful to receive clinically vetted information in small chunks, with delivery of information timely to need. Patients reported that it takes considerable energy to read clinic-provided information materials. The flood of medical language, treatment plans, new clinicians and appointments can feel chaotic and overwhelming.
During wireframe review, nearly all participants expressed high interest in using a clinic-provided mobile app to facilitate electronic search for symptoms leading to information about relevant IO services. In contract to paper-based content, participants appreciate that electronic information is lightweight, difficult to lose, and searchable. When asked about search strategy, participants consistently preferred initiating searches based on symptoms rather than IO modalities. When asked for a term to describe IO services as a whole, participants suggested “care” or “treatment”, or stated they were unaware of an umbrella term.
Utilization of IO services
Participants consistently expressed a desire for IO service recommendations from their oncology providers but stated this rarely occurred. Multiple participants reported that their providers paid greater attention to physical symptoms than to functional or emotional concerns. One participant said “I get tired of doctors skipping over things I tell them about.” Another shared, “I believe they assumed I was feeling OK because of what I do [fitness instructor], but that was not the case.” Another stated, “I experienced muscle wasting and talked with my doctor about it, but it was left to me to decide what to do and how to manage it.” Through spousal recommendation, this participant found massage helpful but reported subsequent surprise at perceived provider lack of interest in discussing the effectiveness of this IO solution. Nearly all patients expressed that they wish their provider saw IO services as “an essential part of care, rather than an optional extra.”
Participants consistently reported that IO services had a positive impact on well-being (Table 2). Services including yoga, mindfulness, meditation, and acupuncture were described as “a life saver”, “essential”, and highly complementary to conventional cancer treatment. One patient summarized this synergy by stating, “My oncologist kills the cancer, and integrative oncology services heal my body.”
Table 2:
Patients desire specific recommendations and strong care team support for use of IO services.
| Theme: Utilization of IO services | |
|---|---|
| Subthemes | Synthesized recommendations for greater personal support |
| – Effective and frequent IO communication – Planning ahead for symptoms and self-care – Digital support for accessing services |
In the clinic: – I need to be taken seriously when I explain emotional and functional concerns – I want advance warning of symptoms that are likely to occur – I want my doctor to view IO services as essential, explain how they complement treatment, and offer positive reinforcement for self-care – I want personalized nutrition recommendations that consider my current lab values, weight and symptoms – I want my medical and IO providers to communicate with each other Between visits, I would use mobile technology to: – Use mindfulness, yoga and other IO apps at home – Visualize symptoms and self-care activity in relationship treatment, so I can learn about temporal symptom patterns and best options for relief |
Few participants reported discussing IO services with their care team. Reasons offered included shortage of time, desire to avoid topics of limited interest to their providers and fear of provider disapproval. One participant explained, “I’ve seen doctors who do not believe there is value [in IO services].” Another participant expressed relief at hearing a provider say, “I’m OK with it as long as it doesn’t replace any [conventional] treatment.”
Participants expressed high interest in the use of a mobile app to streamline IO education and gain access to vetted apps for remote use of meditation, yoga, and other IO services. Participants suggested enhancing mobile app wireframes by adding contact information for IO service providers and relevant community resources.
4. Discussion and Conclusion
4.1. Discussion
The IO landscape includes a variety of non-pharmacologic treatments that enable patients to take an active role in healing.[20] This study explored a small set of patients’ lived experiences to illuminate unmet patient needs, perceived service gaps, and patient preferences related to the design of processes and electronic tools to enhance patient education and well-being in cancer care.
Study findings demonstrate patient willingness to collaborate in conceptualizing and designing consumer health tools [21] to bridge the clinic and home. The first major theme that emerged is active participation in care. Self-descriptions of high motivation to do whatever possible to achieve symptom relief is consistent with an awareness that patients actively participate as knowledge workers in clinical care.[22] Participant self-discovery of solutions is also consistent with the concepts of self-care [23] and coproduction, in which patients are both creators and consumers of care.[24, 25] The circuitous path to awareness of IO services, as the second theme, reveals an imbalance in the coproduction of awareness of IO services, in which patients often self-resource supportive options for functional and emotional concerns. Initiating complex oncology care produces a tsunami of information and the need for education regarding symptom-alleviating services to help patients prepare for care. Patients report that they often do not know what questions to ask, which contributes to delayed symptom management [26].
Participants indicate a desire for searchable content, and prefer searching for IO services by symptom rather than modality. This finding suggests that patients may benefit from electronic rather than or in addition to paper-based information. Participants desire referrals to IO services from trustworthy professionals to heal their body, in addition to killing cancer. Participants’ desire for providers to view IO services as essential echoes cancer survivor descriptions of traditional and complementary medicine as an important aspect of managing side effects and quality of life, and “not a ‘luxury item’”.[27] Given a growing body of evidence regarding efficacy, [9–11] cancer centers have an opportunity to enhance conventional cancer care by proactively addressing IO services in patient education and patient-provider interactions. Patient reports of limited discussions with their provider is consistent with findings that although nearly half of oncology patients in the US use some form of complementary care, [28–30] patient-provider discussions are curtailed due to patient fear of provider disapproval, providers’ perception of a lack of scientific evidence of benefit [30, 31] and provider knowledge of the topic. [32] Extensive patient concerns also contribute to incomplete discussion of symptoms and symptom-alleviating services.[26, 33] Mobile technology has been shown to increase patient engagement in care [34] and multiple IO-oriented apps are available but most lack a connection to patients’ care team and clinic, and tailoring of information to patient-specific situations.
A limitation of this study is its small sample size. Findings cannot be generalized to all oncology patients as participants in this study lived in an urban setting, and nearly all described a supportive informal network. Participants with no prior use of IO services and participants with greater rural and ethnic diversity will be included in future design iterations. Next steps include additional rounds of participatory design sessions during iterative translation of patient needs into enhanced patient well-being solutions. We anticipate that a robust solution will be multi-faceted, involving both new and existing technologies and redesigned clinic processes.
4.2. Conclusion
This study offers directions for addressing unmet needs in symptom management rather than conclusions given the study’s sample size and purpose. Participants recommend that oncology clinics provide patients earlier access to IO information and that information should be tailored to each patient situation, approved by the care team, and electronically searchable. Participants reveal openness to use of a mobile app to learn about and engage with services. Concurrently, participants request frequent communication with providers regarding physical, functional and emotional symptoms and increased provider engagement in recommendation of specific IO services.
4.3. Practice implications
Patients are highly motivated to find solutions to troublesome symptoms but have uncertainty about specific actions they can take to alleviate them, especially when symptoms are functional or emotional. Active collaboration between patients and solution designers is needed to clarify unmet needs and guide development of clinic processes and digital health tools to enhance awareness and use of IO services in conventional cancer care.
Patients seek tailored IO information that is searchable by symptom and augmented by frequent care team communication and recommendations. To mitigate information overload, clinics may consider presenting electronic content that is searchable by symptom to enable patients to consume information about IO options and services in small chunks of increasing depth, as an alternative to paper-based, chapter-style presentation of information at the time of diagnosis.
Supplementary Material
Acknowledgements:
We thank our patient participants for sharing their experiences and perspectives, Kimberly Carson for serving as an integrative oncology advisor, Dan Minkevitch for creativity in developing wireframes, and Dr. Paul Gorman for providing feedback on drafts of this manuscript.
Acknowledgement of research support for the study:
The principal investigator was supported by the U.S. Agency for Healthcare Research and Quality (K12HS026370). The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality. The sponsor had no role in the study design, data collection, analysis, writing of the report, or decision to submit the article for publication.
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