Stress management program for scanxiety in people with advanced lung cancer: Intervention adaptation and stakeholder feedback

Abstract

Background:

Although scanxiety is common and impactful for people with advanced lung cancer, few interventions address this psychosocial concern.

Aims:

To create a stress management program for scanxiety.

Methods:

We conducted a structured intervention adaptation process guided by the ADAPT-ITT framework. We tailored materials from an existing evidence-based program, drafted additional modules, and obtained feedback on initial content. Following content revisions and website prototype development, 21 participants (patients with metastatic lung cancer, n=8; family members, n=3; clinicians, n=10) reviewed the program. Participants rated the program’s acceptability (Acceptability of Intervention Measure; AIM), feasibility (Feasibility of Intervention Measure; FIM), appropriateness (Appropriateness of Intervention Measure; IAM), helpfulness (module Likert ratings), and usability (Post-Study System Usability Questionnaire; PSSUQ), and completed semi-structured interviews.

Results:

Data revealed positive impressions of the program. Participants rated the program as acceptable (89%), feasible (89%), and appropriate (95%; proportion with average ratings ≥4 out of 5 on AIM, FIM, and IAM respectively). They rated 6 of the 7 modules as helpful, appropriate, and fitting with their experience (77-100% with Likert ratings ≥4 out of 5); the below-threshold module (Introduction) was revised based on rapid qualitative analysis of interview data. Although 33% needed help to start using the website, its usability was rated highly after use (PSSUQ Mdn=1.56, IQR=1.11 to 1.82). The refined intervention is a largely self-guided program to enhance stress management skills using psychoeducation, recorded on-demand exercises, and 3 brief coaching calls.

Conclusions:

This highly-rated intervention has the potential to alleviate scanxiety among people with advanced lung cancer.

Introduction

For people living with advanced cancer, routine disease-monitoring scans can prompt anxiety (“scanxiety”).¹ Scanxiety may focus on uncomfortable scan procedures as well as fear and uncertainty about the impending results, which reveal important information about one’s prognosis and treatment response.^2,3 Accordingly, it is not surprising that stress and anxiety are often elevated and ranked as highly concerning for patients when repeatedly undergoing scans.^4,5 In people living with a variety of advanced cancer types, 55% reported feeling worried, scared, or distressed around the time of their last scan.⁶

Scanxiety impacts patients’ quality of life and experience living with cancer.^3,7 Scanxiety may also amplify physical symptoms. For example, advanced cancer patients reported having trouble sleeping, difficulty concentrating, irritability, tension, and other somatic symptoms around the time of their scans.^5,6 Emerging work suggests that anxiety may also complicate patients’ engagement in and understanding of information discussed in clinical settings.⁸ Patients who reported higher anxiety were 10-times less likely to report their recently-discussed scan results accurately than those with lower anxiety.⁹ Accordingly, mitigating patients’ scanxiety while awaiting scan results may have added benefits for patients’ quality of life, physical symptoms, and ability to fully engage in clinical visits.

Scanxiety and its effects may be particularly salient for those living with advanced lung cancer. Despite treatment advances, lung cancer is still the leading cause of cancer death.^10,11 With each routine disease-monitoring scan, there is a possibility of learning about disease progression. In a study of recurrent/metastatic lung cancer patients, 83% reported at least some scan-related distress.⁷ People with lung cancer also typically experience substantial distress, challenges with quality of life, and significant physical symptom burden,^12,13 which may be further exacerbated by scanxiety. Taken together, people with advanced lung cancer may have a unique need for and potential benefit from interventions to reduce scanxiety.

Although some patients may benefit from psychosocial support during the high-stress period around scans, behavioral interventions to manage scanxiety are limited. Stress management programs are effective for coping with other aspects of the cancer experience,¹⁴ and could equip patients with skills for managing scanxiety. Because evidence-based stress management programs exist, adapting a program to address scanxiety is an efficient use of resources and speeds translation.¹⁵ For example, Coping with Chemotherapy is a low-cost, self-guided, brief stress management program that was efficacious for managing anxiety before and during a different stressor (chemotherapy initiation) across various cancer types, including those with lung cancer and advanced cancer.¹⁶ With adaptations, this program may be suitable for managing stress and anxiety around the time of scans.

Accordingly, we sought to tailor an evidenced-based program to address scanxiety, a new clinical context. We adapted a publicly-available Evidence-Based Cancer Control Program (EBCCP; “Coping with Chemotherapy”^16,17) to be relevant for people with advanced lung cancer undergoing routine scans. We conducted the intervention adaptation process based on prior data, the ADAPT-ITT intervention adaptation framework,¹⁸ clinical expertise, and stakeholder feedback. The adapted intervention is a patient-facing, largely self-guided, web-based program to enhance stress management skills using psychoeducation, recorded on-demand exercises, and 3 brief coaching calls. Below, we describe the intervention adaptation process, as well as the results of a series of studies to obtain key stakeholders’ feedback on the intervention content and website usability.

Methods and Results

We used the ADAPT-ITT framework to guide the intervention adaptation process.^18,19 Methods for each of the steps of this framework - Assessment, Decision, Adaptation, Production, Topical Experts, Integration, Training, Testing - are described below and in Figure 1. When relevant, we also present results from formative and feedback studies during the adaptation process. These studies were IRB-approved, and participants provided written or verbal consent prior to the study activities (Weill Cornell Medicine IRB#: 1811019719; Hackensack Meridian Health IRB#: Pro2021-1409).

Figure 1.

Summary of intervention adaptation process guided by ADAPT-ITT framework.

Assessment

Methods

To inform potential intervention content, we obtained formative data on patients’ preferences for ways to manage stress around the time of their scans. We recruited a convenience sample of English-speaking patients (n=9) who were receiving first-line treatment for Stage IV lung cancer at Weill Cornell Medicine and were without moderate-to-severe cognitive impairment (per Short Portable Mental Status Questionnaire²⁰). Research staff reviewed schedules of collaborating clinicians to identify potentially-eligible patients, introduced the study following routine clinic visits, and enrolled participants. After a recent routine scan, participants completed a semi-structured interview in which they were asked to describe their experiences around the time of cancer scans and reported their coping strategies. The interviewer (HDV) also gave brief standardized descriptions of selected stress management strategies (see Supplemental Appendix), and asked participants to rate how helpful each strategy would be for them around the time of their scans, using Likert scales ranging from 1 (not at all helpful) to 5 (extremely helpful). Selected stress management strategies included those from an existing EBCCP from NCI’s repository (Coping with Chemotherapy,^16,17 relaxation exercises and coping self-statements) and other evidence-based strategies (acceptance-based coping, scheduled worry, preparing for appointments, biofeedback). The additional strategies were selected based on cognitive-behavioral theory, prior research showing effectiveness for managing anxiety in other contexts,^21–24 clinical experiences of the study team, and informal discussions with patients, clinicians, and researchers.

Statistical methods.

We used descriptive statistics to summarize intervention preference ratings. In qualitative analyses of patient-generated coping strategies, we used an integrative approach combining deductive and inductive methods.²⁵ First, the lead researcher generated preliminary concepts based on the key research question and experience conducting the interviews. Two coders then reviewed the transcripts and developed codes independently. They met regularly to discuss, iteratively revise for clarity, and review to ensure codes were being applied similarly. Following first-cycle coding of all transcripts, the codes were consolidated into categories and discussed for consensus. Frequency of codes present in transcripts were examined to ensure that the categories captured the most commonly raised points.

Results

Participants (n=9) were primarily white (78%), female (67%) older adults (Mdn age 84, IQR=74 to 87). Of the provided strategies for managing scanxiety, participants rated preparing a question/topic list for appointments (Mdn=5.00, IQR=4.00-5.00), acceptance-based coping (Mdn=4.00, IQR=4.00-5.00), and coping self-statements (Mdn=4.00, IQR=2.00-4.50) as most helpful. Perceived helpfulness was moderate for relaxation exercises (Mdn=3.50, IQR=2.75-4.25), and lowest for biofeedback (Mdn=3.00, IQR=2.00-4.50) and scheduled worry (Mdn=2.00, IQR=1.50-4.50).

Patients also described their own experiences of using a diverse range of coping strategies to manage scan-related stress. Participants commonly described that engaging in pleasant and/or meaningful activities was helpful for them. For example, one participant noted, “I took a couple hobbies up … It takes up your mind and it takes up your time” (Participant 7003). Some participants described using acceptance-based coping strategies, such as “just accepting what’s happening and not trying to fight it away” (Participant 7012). On the other hand, some participants mentioned distraction, such that they “try not to worry about it” (Participant 7005). Participants also described communicating with their healthcare team about their scans. For example, a participant noted that their healthcare team “tells me very often that it might take up to a week … so they prepare me, which is helpful” (Participant 7001). Other participants highlighted how social support and religion/spirituality helped them cope with scans. Finally, one participants mentioned receiving medications to address claustrophobia related to the scan procedure. These patient-generated strategies highlighted additional ways that participants coped with scanxiety, beyond the selected strategies they were specifically asked to rate. Overall, the formative data obtained in this step helped to identify promising, patient-preferred stress management strategies for scanxiety.

Decision

Methods

With the formative data in mind, the lead investigator reviewed the existing stress management EBCCP (Coping with Chemotherapy^16,17) to determine program fit, and to decide whether it should be adapted or used in the current format. Coping with Chemotherapy is a CBT-based stress management skills program. The program includes: (1) written psychoeducation materials about stress, relaxation, and cognitive restructuring, (2) a video to introduce the program and audio-recorded relaxation exercises, and (3) worksheets to self-report daily stress and stress management skill practice. The program is designed to be self-guided, with a brief introduction from a non-specialist facilitator.

Results

We decided to use and adapt the program for several reasons. First, the program’s key components (relaxation exercises and cognitive reframing) received satisfactory ratings in the formative study. In addition, the program’s brief, largely self-directed approach seemed ideal for advanced cancer patients who have unique symptoms that can impede more time-consuming interventions (e.g., fatigue)^26,27 and for scalability. Third, the program materials were publicly available in NCI’s EBCCP repository,¹⁷ promoting ease of access for adaptation. Finally, the formative evaluation and clinical expertise suggested the need to adapt the program; additional coping strategies were rated highly by patients, and the existing content needed to be tailored to align with patients’ experiences of scanxiety. After deciding to use and tailor the Coping with Chemotherapy program, we began to plan specific adaptations that could be carried out in subsequent steps. For example, we planned to add a program website to promote dissemination and scalability,²⁸ while providing a portable way for patients to practice the stress management exercises.

Adaptation

Methods

To adapt the program and obtain initial input on its content, we (1) tailored existing content to scanxiety, (2) created new program modules, and (3) vetted preliminary content with a small number of key stakeholders. To tailor the content to scanxiety, the program introduction and cognitive reframing module were revised significantly to focus on cancer scans. Due to its focus on chemotherapy, the existing introductory video was replaced with written detail on cancer scans; written detail was selected due to the scope of this project. We developed additional program modules, according to patient-preferred strategies revealed in the formative evaluation, clinical expertise, and cognitive-behavioral theory. The new modules focused on engaging in pleasant activities, acceptance-based coping, patient preparation/activation for upcoming appointments, and informed decision-making regarding receiving results in patient portals. Following these changes, the original intervention’s developers reviewed the adapted program materials to ensure that the key components and spirit of the program remained intact.

To obtain initial feedback on the content (to inform website development and prior to obtaining more extensive feedback on the program, described below), we vetted the draft materials with several stakeholders in the anticipated user population. Four people with Stage IV lung cancer and one family member were recruited through a community organization to review a draft of the written content. Although the program is a patient-focused intervention, we anticipated that family member/caregiver input on the program would be helpful for several reasons. First, family members/caregivers may help patients engage with and use the stress management program. Second, they likely have close knowledge of their loved one’s scanxiety symptoms and may anticipate how a patient would potentially use the program. Finally, family members/caregivers also experience scanxiety,²⁹ and could potentially use the program or a companion version in the future.

Participants provided feedback in surveys and semi-structured interviews. Participants rated the overall program using the Acceptability of Intervention Measure (AIM), Feasibility of Intervention Measure (FIM), and Intervention Appropriateness Measure (IAM).³⁰ Response options for the AIM, FIM, and IAM range from 1 (completely disagree) to 5 (completely agree), with higher scores indicating greater acceptability, feasibility, and appropriateness, respectively. They also rated each module’s helpfulness, appropriateness, fit with their experience, and their willingness to try the strategy using Likert scale items (response options from 1 to 5), with higher scores indicating better helpfulness, appropriateness, fit, and willingness).³¹ They provided open-ended feedback in open-text responses and a semi-structured interview.

Statistical methods.

We summarized the survey data using descriptive statistics, with a benchmark of 70% satisfactory ratings to guide revisions (proportion with ratings ≥ 4 on module Likert scales; proportion with average scores ≥ 4 on overall AIM, FIM, and IAM). For areas with below-threshold satisfactory ratings, revisions were guided by the interview data. Two team members reviewed the interviews, identified suggested revisions for the below-threshold modules, and discussed for consensus.

Results

Characteristics of the 5 stakeholder participants who reviewed initial program content are displayed in Table 1. Overall, the participants rated the program as feasible (100%), acceptable (80%), and appropriate (100%) according to benchmarks (average score ≥ 4) on the validated FIM, AIM, and IAM scales, respectively. We also examined module-specific satisfaction ratings. For 5 of the 7 modules, participants rated that the program was helpful, appropriate, fitting with their experience, and that they would be willing to try the given strategy (80-100% with Likert ratings ≥ 4 out of 5). Because module surveys indicated lower perceived helpfulness for 2 modules, we revised the modules covering cognitive strategies (60% with Likert ratings ≥ 4 out of 5) and acceptance-based strategies (40% with Likert ratings ≥ 4 out of 5) based on suggested revisions identified in the interview data. For the cognitive strategies module, we re-worded the psychoeducation section, edited examples of balanced thoughts about scans, and added acknowledgement of how difficult it can be to identify and reframe thoughts under stress, according to participant feedback. For the acceptance-based module, we renamed the module from “Letting Stress Be Present” to “Riding the Waves of Emotion,” replaced an analogy used to explain emotional avoidance (from a Chinese finger trap analogy to a “white bear” thought suppression exercise), and created additional options for the audio-recorded emotional awareness exercise (adding Mindful Breathing and Five Senses Meditation exercises to complement the Noticing Emotions exercise, which participants described as difficult). These revisions strengthened the program content, and production of a patient-facing website could proceed with the refined content (Table 2).

Table 1.

Characteristics of 3 separate samples of participants who provided input during the intervention adaptation process.

Adaptation process step	Assessment	Adaptation	Topical Experts
Summary of participant activities	Rated helpfulness of selected stress management skills via interview	Reviewed initial program content and gave feedback via surveys and interview	Reviewed website prototype and gave feedback via surveys and interview
Sample size	N=9	N=5	N=21
Characteristic	n (%) or statistic	n (%) or statistic	n (%) or statistic
Participant type
Patient	9 (100%)	4 (80%)	8 (38%)
Family member/caregiver	0 (0%)	1 (20%)	3 (14%)
Clinician	0 (0%)	0 (0%)	10 (48%)
Age, median	84 (range: 68 to 90+)	45 (range: 25 to 76)	43 (range: 32 to 82)
Gender
Female	6 (67%)	3 (60%)	15 (75%)
Male	3 (33%)	2 (40%)	5 (25%)
Race and ethnicity
American Indian/Alaska Native	0 (0%)	1 (10%)	0 (0%)
Asian	2 (22%)	3 (30%)	6 (29%)
Black/African American	0 (0%)	0 (0%)	1 (5%)
Hispanic or Latino/a	0 (0%)	2 (20%)	2 (10%)
White	7 (78%)	2 (20%)	12 (57%)
Education level
High school	0 (0%)	1 (10%)	1 (5%)
Some college	0 (0%)	1 (10%)	4 (19%)
College degree or higher	100 (100%)	3 (30%)	16 (76%)
Time since lung cancer diagnosis*
< 1 year	6 (67%)	4 (40%)	5 (45%)
≥ 1 year	3 (33%)	1 (10%)	6 (55%)

Note: Percentages are shown from those with available data for each variable. Gender was missing for 1 clinician. Time since lung cancer diagnosis only includes data from patients and family members.

Table 2.

Modules in the refined stress management program.

Module	Goal of psychoeducation	Practice activity
Introduction	To introduce and normalize the concept of scanxiety	Exercise to recognize scanxiety and reflect on their own experiences
Relaxation	To describe how relaxation exercises can calm the body	Audio-recorded relaxation exercises
Coping Self-Statements	To describe how thoughts are related to emotions, and how balanced thinking can help to manage stress	Exercise to identify negative thoughts and balanced thoughts
Planning Pleasant Activities	To describe how engaging in pleasant and/or meaningful activities can help mitigate stress	Exercise to identify, schedule, and anticipate/resolve barriers to engaging in a pleasant activity
Riding the Waves of Emotion	To normalize negative feelings about scans, describe how avoiding negative feelings can worsen them, and how allowing them to be present can help anxiety to lessen over time	Exercise to review acceptance-based reminder statements and identify which resonate with them Audio-recorded meditation exercises
Preparing for Appointments	To describe how preparing for appointments in advance can help to reduce stress and promote high-quality discussions with their clinicians	Exercise to create a checklist of high-priority questions for an upcoming appointment
Receiving Results in a Patient Portal	To describe the option, pros, and cons of accessing automatically-released test results in patient portals	Exercise to encourage informed decision-making on whether to access test results in their patient portal

Production

Methods

We then prepared a full draft of the program materials, including a booklet, website prototype, and audio-recorded stress management exercises. The web development team (Purple Workshops, LLC) created a prototype website containing the program modules (self-guided psychoeducation and stress management exercises), which was refined iteratively through regular meetings and feedback from the research team. Features of the prototype website included a Library with the program modules, audio-recorded relaxation and meditation exercises, interactive pages with checklists and prompts, and a Practice area for participants to select and easily return to their favorite activities. By showing the key features and content of the stress management program, the website prototype was a key tool to next obtain participants’ feedback on the program.

Topical Experts

Methods

To determine the prototype website’s acceptability, feasibility, and usability, we obtained feedback from a new sample of 21 stakeholders. Patients with Stage IV lung cancer (n=8), family members of such patients (n=3), and multidisciplinary oncology clinicians (n=10) were recruited for this study, given their expertise and experiences with scanxiety. To recruit patients and family members, research staff reviewed schedules of collaborating John Theurer Cancer Center clinics to identify potentially-eligible patients, introduced the study following routine clinic visits to patients and family members, and enrolled participants. Patients and family members were eligible if they were English-speaking adults with a personal history of or family member/loved one with Stage IV lung cancer within the past year. Those with severe psychiatric illness, severe cognitive impairment (determined by Callahan Six-Item Screener³²), severe fatigue that would interfere with study activities, or those receiving hospice were excluded. To recruit clinicians, research staff approached oncology clinicians at John Theurer Cancer Center and through team members’ professional contacts. Clinicians with more than 1 year of clinical practice treating advanced cancer patients were eligible.

People with Stage IV lung cancer (n=8), family members (n=3), and multidisciplinary oncology clinicians (n=10) reviewed the website and rated its helpfulness, acceptability, and feasibility. Participants rated the overall program using the Acceptability of Intervention Measure (AIM), Feasibility of Intervention Measure (FIM), Intervention Appropriateness Measure (IAM).³⁰ They rated the website usability on the Post-Study System Usability Questionnaire (PSSUQ).³³ They also rated each module’s helpfulness, appropriateness, and fit with their experience using Likert scale items (1 to 5 rating scale). They provided open-ended feedback in open-text responses and a semi-structured interview (n=15).

For context, patient and family member stakeholders reported their typical level of scan-related stress. They were asked to think about their typical experience around the time of cancer scans that occurred after their cancer diagnosis (or their family member’s diagnosis), including waiting for the results. They completed the Impact of Events Scale-6 item short form,³⁴ a modified Distress Thermometer item,³⁵ and an item from the Fear of Progression scale.³⁶ They also answered a face-valid item on whether they felt more stressed, worried, or anxious around the time of scans than they normally do. Please see the Supplemental Appendix for the items used to assess scanxiety.

Statistical methods.

We summarized the survey data using descriptive statistics, with a benchmark of 70% satisfactory ratings to guide revisions. Percentages were computed among those with available data for a given item/measure; overall program ratings on the AIM, FIM, and IAM were missing for 1 patient and 1 family member. We then used rapid qualitative analysis to analyze the interview data.^37,38 After the interviews were transcribed verbatim, we reviewed transcripts for accuracy. Two team members (OB and HDV) reviewed each transcript, used a template to summarize key topic areas according to the interview guide (e.g., feedback on the overall program, modules, and website), then discussed interview summaries in consensus meetings. Once consensus was reached, summary points were compiled into a matrix to synthesize data from each participant by topic area. The matrix table was created using Microsoft Word, and team members used the comments feature for coding. To support the goal of refining the intervention, team members reviewed and coded the matrix iteratively to identify participant impressions within two pre-defined categories: suggested revisions and strengths of the program. One team member initially reviewed the matrix and coded for “strengths” and “suggested revisions.” The second team member reviewed the matrix for any additional or discrepant strengths and revisions, and to identify common impressions that were present across participants. Both team members then reviewed the common participant impressions for consensus.

Results

Table 1 displays the sample characteristics for the 21 participants who reviewed the website prototype and provided feedback. Of the patient participants (n=8), most identified as White (n=5, 63%), non-Hispanic (n=6, 75%) women (n=6, 75%), ranging in age from 32 to 82 years (Mdn=58 years, IQR=38 to 66). Half (50%) had a college-level education. Most (n=6, 75%) had been diagnosed with lung cancer more than a year ago. Of the family member participants (n=3), most identified as Asian (n=2, 67%), non-Hispanic (n=3, 100%), women (n=2, 67%), ranging in age from 38 to 70 years. Clinicians (n=10) included nurse practitioners (n=4), physicians (n=4), and mental health professionals (n=2) who were primarily practicing in oncology (n=6, 60%) and/or palliative medicine (n=4, 40%).

Of the patient and family member participants (n=11), most reported being nervous prior to oncology appointments (n=8, 73% responding at least “sometimes” on an item from the Fear of Progression scale). Many reported being more stressed, worried, or anxious around the time of scans (n=6, 55%). The median score on the IES-6 was 8 (IQR=6 to 9), with 18% reporting clinically significant scan-related intrusive thoughts (scores of 10 or above).³⁴ On the modified Distress Thermometer, 64% (n=7) reported that they typically experience significant distress (ratings of 4 or above) related to their cancer scans.

Overall, participants rated the program as feasible (89%), acceptable (89%), and appropriate (95%) according to benchmarks (≥70% of sample with average score ≥ 4) on the FIM, AIM, and IAM respectively (Figure 2). They rated 6 of the 7 modules as helpful, appropriate, and fitting with their experience (77-100% with Likert ratings ≥ 4 out of 5). The Introduction module was rated below the benchmark for helpfulness (67%), so it was prioritized for revision. Although 33% indicated needing help from research staff to start using the website, its overall usability was rated highly after use (PSSUQ Mdn=1.56, IQR=1.11 to 1.82), suggesting the utility of guided on-boarding.

Figure 2.

Percentages of participants with satisfactory ratings of the refined program by participant type (patient and family member participants, combined due to small number of family members; clinician participants; all participants). Percentages indicate the proportion of participants with satisfactory ratings (average scores ≥4) on the Acceptability of Intervention Measure, Feasibility of Intervention Measure, and Intervention Appropriateness Measure after reviewing the website prototype. The red dotted line represents the a priori benchmark of 70% of participants with satisfactory ratings, suggesting the program was viewed as acceptable, feasible, and appropriate.

The rapid qualitative analysis of interview data revealed strengths and areas for improvement in the program (Table 3). Overall, participants described the program as helpful, relevant to their experience, clear, and acceptable in length. They highlighted that different parts of the program will likely resonate with each person who uses it, and suggested emphasizing ways that users can personalize the program to their unique preferences (e.g., prioritizing skills that they prefer, adding their own responses to exercises). Participants’ module-specific feedback highlighted aspects that they found helpful and aspects that needed revision (Table 3). When asked about the website interface, participants often described the layout as simple and easy to navigate, the font as easy to read, and the graphics and colors as appealing. Others reported that they would prefer more complex or sophisticated graphics or features. Common impressions also included suggestions for longer-term changes; participants suggested translating the program into additional languages, adding more videos and features (e.g., ability to select a male or female voice for the audio exercises), and introducing the program earlier around the time of diagnosis. In summary, the positive participant feedback and suggested revisions prepared us to finalize the program and website.

Table 3.

Participant impressions of program strengths and suggested revisions from semi-structured interviews.

	Strengths		Suggested Revisions
Area	Participant Impressions	Representative Quotes	Participant Impressions	Representative Quotes
Overall program	• The program was helpful. • The material was relatable. • The program was an acceptable length. • In addition to being relevant for scans, the material was pertinent to other stressors or parts of the cancer experience.	“I can relate to it 100%. It’s a great thing that something like this is being created or put together.” –Patient participant, #8 “I think this is a really fantastic program. I would definitely encourage my patients to use it.” –Clinician participant, #26	• Emphasize individualization (what works for some may not work for all, allow ‘add your own’ features in exercises). • Add greater reference to family / social support. • Reference other ways to cope with stress (e.g., spirituality). • Shorten videos when possible. Long-term suggestions: • Translate the program into other languages. • Add sophisticated graphics and videos. • Offer a version for family members. • Introduce the program around the time of diagnosis.	“People are different types of learners and they respond to different things differently. So, I would say just try them all and see what sticks with you.” –Clinician participant, #20 “Some of [the videos] were a little bit long for me … The brief ones would be the ones that I would gravitate toward. …Between 5 and 10 minutes.” –Family member participant, #19 “I just think this is a wonderful opportunity for you to help people when they’re first diagnosed. I wish this was available when I got my diagnosis.” –Patient participant, #18 “Is the website gonna have the ability to have different languages? When I go to the chemo sessions, there are a lot of people out there that English is not their first language.” –Patient participant, #8 “It would be helpful if maybe there were ways to include, like, caretakers and family members into this because I think it would be helpful for them.” –Clinician participant, #20
Module: Introduction	• This section normalized and validated the experience of scanxiety. • It reminded participants that they were not alone in their experience.	“It gave me a different outlook … I’m not alone.” –Patient participant, #10 “Absolutely [helpful]… Having a name for it, and that it’s a real symptom.” –Patient participant, #12	• Add information about the stressful aspects of the scan experience itself and how to manage them (eg-medications) • Build up the module and/or clarify that no skill will be introduced in this section.	“[The Introduction] just didn’t apply to what happens to me. … I wasn’t anxious beforehand, but the – you know what happened in the scans itself is what was uncomfortable.” –Patient participant, #16 “Patients are anxious about actually going into the machine and not so much the results. Sometimes we give them Valium or Ativan or Xanax.” –Clinician participant, #20 “[The Introduction module] really wasn’t anything, there was no meat and potatoes in it. …There were no techniques offered.” –Patient participant, #12
Module: Relaxation	• Audio exercises were relaxing. • Deep breathing was highlighted as particularly useful.	“I think it’s very important. … Also, to be used during -- not only just ahead of time but during -- going for scans, how this is a helpful, a useful exercise.” –Patient participant, #18 “I can imagine some of my patients being interested in it. … There’s not enough of this stuff being out there. This is low burden, potential benefits.” --Clinician participant, #22	• Add instructions to the videos to know what to expect (length, what to do).	“[Add] like ‘if you have five minutes, here’s this one.’” –Clinician participant, #25 “I didn’t understand why there were three [relaxation] videos. …Something needs to be added there. Otherwise it’s just like ‘Okay, why is there a 5-minute video, a 9-minute video, and a 5-minute video?’” –Clinician participant, #22
Module: Coping self-statements	• The examples of balanced thoughts were helpful.	“You find out that it’s not always as bad as what your mind thinks. … These [statements] are good.” –Patient participant, #17 “I thought the statements were really great.” – Clinician participant, #26	• Allow users to add their own balanced thought and address functionality of this feature.	“I think it is good to have the list of thoughts. People sort of know where you’re going. But then just remind them to make it very personal because then that’ll resonate more.” –Family member participant, #19 “I can’t add my own [thought]. I got stuck where I couldn’t - it was a technical thing.” –Clinician participant, #25
Module: Riding Waves of Emotion	• The concept of allowing feelings to be present (vs. avoiding them) resonated with participants. • The polar bear analogy helped to illustrate the concept of avoidance. • The activity to check off acceptance-based “reminders” was helpful.	“The Five Senses [meditation], I like that…. I love that one.” –Patient participant, #17 “Learning to sit with emotion is really important and yeah, ultimately will be beneficial throughout the cancer experience, not just with scanxiety.” –Clinician participant, #26	No central impressions were identified.	n/a
Module: Pleasant activities	• This strategy made participants feel empowered (enhanced purpose, independence). • The list of example activities was appropriate for those with advanced cancer. • The planning and scheduling activities were helpful.	“Once you’re active in that activity, you, you don’t worry so much about tests and scans and cancer and all that.” –Patient participant, #12 “I like that because part of my biggest problem is like getting up and getting motivated. So like planning it is helpful because I sometimes just don’t wanna do anything. And so taking the time to set it up or have someone that you’re gonna do it with, you know, will kind of help motivate you. And get it done with you.” – Patient participant, #16	• Emphasize that activities can be adjusted as needed based on physical functioning. • Include participants’ suggestions for various additional pleasant activities.	“[My family member] no longer has the mobility she had. So to do the things that might provide her comfort is much more challenging now. Everything has to be sort of dialed back. I think there just needs to be some acknowledgment of that.” –Family member participant, #19 “[Add] cooking a meal with friends, something like that.” –Patient participant, #18
Module: Preparing for appointments	• Writing down questions was a useful strategy. • The questions included in the example list were useful and appropriate.	“This strategy is definitely needed. … Always write down your questions. Always have a little notebook.” –Patient participant, #12 “These are all very helpful questions … Yeah, I mean, a lot of my patients do this. Not everybody does this. And so it’s good to have this as a module so that they have some thoughts about this…” –Clinician participant, #24	• Add the suggestion to bring a support person with them to appointments and include their support person in their questions. • Revisit the layout of the questions list, so that it is prioritized and not as long.	“A friend usually accompanies me [to appointments]…that helped me having that person there.” –Patient participant, #10 “Sometimes it’s helpful to bring their friends or family members because if the results are bad, it’s very hard for patients to absorb the information - and then talk about the treatment options, but they’re overwhelming. So we like the extra ears. I don’t know whether that’s mentioned [in the program].” –Clinician participant, #24 “[The questions] are a lot for one page.” —Clinician participant, #25
Module: Receiving Results in a Patient Portal	• Participants liked the focus on understanding the options for receiving results in a patient portal, and thinking about their own preferences. • The information on pros and cons of receiving results in the portal was useful.	“You would think that is common sense, but it’s good that you spelled it out. You can choose to read your test results, you can waive, or you can do nothing.” –Patient participant, #18 “I think this is good because it brings up thought-provoking questions of what’s going to happen if I do look at the results, how I’m going to react because I have this happen all the time.” –Clinician participant, #30	No central impressions were identified.	n/a
Website interface	• The website was easy to navigate. • Participants liked the colors and graphics. • The simplicity made it easy to use. • The text and font were easy to read.	“You had to show me everything because I am not a tech girl. But once I got it … it was very easy.” –Patient participant, #12 “It’s simple. It’s easy. Very easy to navigate.” –Patient participant, #16 “I liked the simplicity of it. It wasn’t overblown with unnecessary graphics.” –Family member participant, #19	• Add features, videos, graphics. • Address “bugs” such as scrolling issues. • Provide assistance with using the website for the first time. • Change the title to reflect that these skills can be used outside of scans/for other stressors during cancer.	“You need to jazz it up a little bit.” –Patient participant, #18 “It helped that you were teaching me how to do this.” –Patient participant, #10 “There were times I couldn’t scroll or something.” –Clinician participant, #25 “ I would maybe not use that [title] because it focuses specifically on just like the scan portion of everything.” –Patient participant, #16 “I think [the website title Support My Scan] is fine. But this is not only about the scan … they’re learning skills that are transferable and could impact other aspects of their care.” –Clinician participant, #24
Ease of comprehension	• The language used was understandable and at an appropriate literacy level. • The program/information was clear.	“It never was too technical … I was able to understand. It was simple enough. Like I never was confused by it.” –Patient participant, #16 “Everything makes sense.” –Patient participant, #17	No central impressions were identified.	n/a

Integration

Methods

To produce a refined version of the program, we integrated stakeholders’ feedback from the prior step. Informed by the qualitative data, revisions were made to the Introduction module to strengthen discussion of procedure-related anxiety (e.g., claustrophobia, receiving contrast dye), acknowledge additional stressors (e.g., cost, worry about family members), and emphasize that stress management preferences are individualized. Interview data also informed changes to the website, other module content, and future pilot trial procedures (e.g., a tutorial and guided onboarding session to provide assistance with accessing the website for the first time). Next, the website was finalized for pilot testing. The revised program home page is displayed in Figure 3.

Figure 3.

Revised website home page informed by stakeholder feedback.

Training

Methods

The refined program involves 3 brief coaching sessions to orient participants to the website, to promote engagement with the self-guided intervention, and to assist with setting goals for stress management skill use. In order to standardize coaching call delivery, training materials were developed for study team members who would serve as facilitators (“study coaches”) in the pilot testing phase. The training was designed for those with Bachelor’s level training and experience in behavioral research and/or interventions. Training materials included (1) a brief presentation to introduce the purpose and rationale for the program and its approaches, (2) a facilitator manual, and (3) a workshop-style presentation for discussion and practice of coaching techniques in the facilitator manual.

Testing

Methods

Equipped with a stakeholder-informed program and facilitator training materials, the next step in this line of work is to pilot test the stress management program to determine its acceptability and feasibility (NCT06199570). The two-phase pilot study involves an open trial phase and randomized controlled trial phase (vs. enhanced usual care). Patients receiving treatment for advanced lung cancer who are assigned to the stress management condition will be introduced to the website and encouraged to review the modules prior to an upcoming cancer scan. In order to reduce access limitations, they will be provided with iPads to complete the program; tablet devices were selected to provide a larger visual field than a smaller mobile device, given the potential for age- and disease-related visual impairment in the participant population. About a week before their scans, study coaches will encourage participants to make a personalized stress management plan to practice the skills that resonate with them. About a week after participants’ scans, study coaches will encourage them to revisit their stress management plan to determine whether they may like to continue its use for new stressors or future scans, or if adjustments are needed. The feasibility and acceptability data from the pilot testing phase will be used to inform future testing of the program’s efficacy and guide revisions as needed.

Discussion

Although scanxiety is common and bothersome to people living with advanced lung cancer, psychosocial support for this specific context is currently limited. By conducting an intervention adaptation process guided by the ADAPT-ITT framework, we created a stakeholder-informed stress management program to address scanxiety. The finalized intervention is a largely self-guided program that includes a booklet, website, and brief coaching sessions from a trained Bachelor’s-level facilitator. The modules contain evidence-based stress management strategies, including psychoeducation and exercises to practice each stress management skill. People with advanced lung cancer, their family members, and their clinicians perceived the program to be helpful and acceptable for managing stress and anxiety around the time of cancer scans. These findings suggest the promise of this program. More broadly, participants’ feedback also underscores that evidence-based strategies for managing stress may be welcomed by people living with advanced lung cancer around the time of routine cancer scans.

Overall, participants’ survey ratings and open-ended feedback indicated positive views of the program’s psychoeducational content and stress management exercises. They described that the content was relevant to their experience, and may help patients to manage stress and anxiety around the time of their cancer scans. Participants appreciated that the program normalized their experience of scanxiety, suggesting this may be a particularly helpful component of the approach. At the same time, participants emphasized that each individual’s experience of scanxiety is unique, as are their preferences for specific coping strategies to manage it. Accordingly, allowing patients to personalize the program by practicing the set of strategies that they find most useful and preferable may be a well-suited approach, which is highlighted in our program. The program’s design with multiple components and modules allows for this flexibility, since individuals will likely have distinct preference on what resonates with them.

The participants’ feedback also enhanced the program in preparation for pilot testing. For example, their comments led to strengthening the Introduction module to describe a wider range of patient experiences with scans. Consistent with prior conceptualizations of scanxiety, participants highlighted the importance of including both scan procedures and the uncertainty of results as contributors to scanxiety.³ Based on their input, a website tutorial and orientation session were created to improve the study on-boarding procedures for the pilot trial.

In addition, participants’ input helped to inform future directions. For example, participants recommended translating the program so that it could be available in other languages. Several patient participants also suggested that having access to stress management tools earlier in their cancer journey, near the time of diagnosis, would have been helpful for them. Finally, developing versions of this program that are designed for or encourage participation from family members and other support people was recommended. Although these suggestions were beyond the scope of this project, they provide important directions for future research.

We obtained input from patients, family members, and multidisciplinary oncology clinicians at multiple points in the intervention adaptation process, which helped to align the intervention with their preferences. Inclusion of stakeholders in the development of scanxiety interventions is rare, and a strength of this work. We expect that the use of stakeholder input to guide revisions will help to maximize its acceptability in the next phase of intervention testing.³⁹ Our sample included a range of younger and older adults, and those with varying self-described levels of comfort with technology (e.g., 33% used assistance from staff to start using the website), another strength. The inclusion of older adults our adaptation process is unique, relevant, and important, given that more than half of newly diagnosed lung cancers are in those age 70 years and older.¹⁰ Including these individuals at the early stages of intervention adaptation and website development resulted in revisions aimed to improve usability and accessibility.⁴⁰ We also designed the program with scalability in mind, including a website and booklet to deliver the materials (versus live session-based delivery), and brief coaching calls by Bachelor’s-level facilitators to promote engagement (versus advanced-degree mental health specialists). In addition, clinicians who reviewed the refined program indicated that they perceived the program to be acceptable, feasible, and appropriate for patient use. While the program’s implementation must be tested in future studies, we expect that these design choices will promote its uptake and implementation.

Limitations

The stakeholders who provided input on the intervention were from relatively small convenience samples, which are not representative of all people living with advanced lung cancer. For example, all participants were English-speaking, and they were primarily white and highly educated, a limitation. Participants who rated their preferred stress management skills in the formative evaluation were primarily older white women, which may limit the generalizability of the program. While the program was rated as acceptable in an additional sample with a wider age range and slightly more diverse racial and ethnic backgrounds, it is possible that other groups may prefer different strategies, an area to explore in future work. Further, input from those with additional cancer types may be useful prior to extending the program’s use to other populations. While people with other cancer types experience scanxiety around routine cancer scans and tests that is expected to be similar in nature,^2,3 they may also have unique concerns to account for in the program materials or in its implementation. In addition, some parts of the adaptation process were limited by the scope of the project. For example, the program was only created in English, and original patient testimonial videos on chemotherapy were replaced with written testimonials related to scanxiety. Finally, family members/caregivers were less represented across the adaptation process; while an emphasis on patient input fits the patient-focused format of this program, it limits insights on whether the program may be suitable for family members in the future. These limitations suggest future directions in translating and/or culturally adapting the program, incorporating additional media/videos into the program, and further exploring family members’ preferences for managing scanxiety.

Clinical implications and conclusion

In summary, behavioral interventions to reduce scanxiety have the potential to improve the experience of living with cancer.³ In this study, an intervention adaptation process resulted in a highly-rated, stakeholder-informed stress management program for scanxiety among those with advanced lung cancer. The initial version was guided by patient-preferred strategies, and revisions were informed by input from patients, family members, and clinicians. Next, the program’s feasibility and acceptability will be tested. If the program is feasible and acceptable, a larger trial will determine its efficacy for managing stress and anxiety around the time of cancer scans. Accordingly, the creation of this program represents a key step toward maximizing quality of life for those with advanced lung cancer during the highly stressful, under-addressed time period around cancer scans.