Barriers and Facilitators to Shared Decision-Making in EGFRm Non-Small Cell Lung Cancer: Patient Perspectives

Abstract

Introduction

The Global Lung Cancer Coalition Patient Charter highlights that every patient should have involvement in decision-making. In lung cancer, patient involvement in treatment decision-making is often perceived as difficult to achieve.

Purpose

This study explored the experiences of patients with epidermal growth factor receptor mutated (EGFRm) non-small cell lung cancer (NSCLC) to identify the barriers and facilitators to their involvement in decision-making.

Patients and Methods

An online Bulletin Board where participants answered quantitative and qualitative questions, interacting with an online moderator, was used to capture the experiences of 28 self-selected adult patients with EGFRm NSCLC recruited through a patient organisation.

Results

56% (15/27) of patients felt involved in their treatment decisions; they received sufficient information from their doctor and were able to ask the questions they needed. Information most important in supporting treatment decision involvement was: treatment effectiveness; impact on prognosis; mechanism of action; impact of treatment on daily life; treatment administration; possible side effects and their management. 37% (10/27) of patients did not feel involved in their treatment decisions. Half (5/10) were not asked about their treatment preferences. Patients who did not feel involved reported a lack of understanding about EGFR, confusion over medical terms that led to misunderstandings, and no personalisation of treatment information. 43% (12/28) of patients reported that their doctors used visual aids (CT scans, hand drawing/annotating diagrams and charts). When used, these enhanced patients’ understanding and involvement. Most patients (96%, 27/28) wanted to understand treatment effectiveness; progression free survival, overall survival, overall response rate but struggled to understand the medical terminology.

Conclusion

These findings from a small, self-selected group of patients highlight the importance of clear information, personalised and tailored to individual patients, in enabling patients with EGFRm NSCLC to be involved in their treatment decisions. Validation in a broader patient population would be valuable.

Introduction

Lung cancer is the leading cause of cancer-related death worldwide, and non–small cell lung cancer (NSCLC) comprises the majority of cases. Although most patients are diagnosed at an advanced stage (Stage III or IV), where five-year survival rates remain poor, recent therapeutic advances have led to meaningful improvements in patient outcomes.^1–4 NSCLC is a heterogeneous group that includes a subset driven by activating mutations in the epidermal growth factor receptor (EGFRm). Patients with EGFRm NSCLC are often eligible for targeted therapies that can offer improved tolerability and disease control compared with conventional chemotherapy. However, these targeted therapies add to the complexity of the treatment decision. Clinicians and patients face complex decisions regarding the initiation, sequencing, or discontinuation of therapies, including consideration of the potential for developing resistance to treatment (i.e that treatment may stop working), which involve balancing potential survival benefits against side effects and impacts on quality of life^5,6 across multiple treatment scenarios.

In recent years, shared decision-making (a model in which clinicians and patients collaborate in evaluating treatment options, weighing risks and benefits, and aligning choices with patient preferences) has been championed in oncology as a key component of patient-centred care.⁷ Several conceptual frameworks have been proposed to support shared decision-making in clinical practice. Among the most widely used is Elwyn’s updated Three-Talk Model,⁸ which describes shared decision-making as an iterative process involving Team Talk (where the multidisciplinary clinical team work together to describe choices, offer support, and ask about goals); Option Talk (where clinicians discuss alternatives with patients using risk communication principles); and Decision Talk (where clinicians elicit informed preferences from patients and support them in making preference-based decisions), and provides a practical framework for supporting patient-centred treatment decisions. In cancer settings especially, many decisions are “preference sensitive”, meaning that the best option depends on how patients value quality versus quantity of life.⁹ Empirical evidence suggests that involving patients meaningfully in decision-making can reduce decisional conflict and improve attitudes towards treatment and healthcare professions.^10–12

Within thoracic oncology, the Global Lung Cancer Coalition Patient Charter highlights that every patient should have informed self-determination, including involvement in treatment decision-making.¹³ Such involvement improves patients’ emotional outcomes and reduces healthcare utilisation,¹⁴ but is often perceived as difficult to achieve.^15,16 While patients are increasingly involved in treatment decisions,¹⁷ recent research suggests there is still a disconnect between doctors and patients in their expectations and preferences for shared decision-making; around half of doctors still assume patients with locally advanced or metastatic NSCLC prefer the doctor to make the treatment decision, whereas only a minority of patients want this, with the majority preferring a more collaborative approach.¹⁸ Furthermore, one study found that 1 in 4 UK patients with lung cancer felt that treatment decisions were not sufficiently aligned with their preferences.¹⁹ This disconnect is reflected in the discordance between the role patients want to play in their care versus the role they are enabled to play. A systematic review of 31 studies exploring patients’ preferred and perceived level of involvement in cancer treatment decisions highlighted that, whilst the majority of patients favoured and experienced a shared or active role, around one third did not perceive the level of involvement they preferred. This discordance was greatest for those patients who preferred shared decision-making.¹⁷ What is less clear from previous research are the specific experiences and needs of patients with EGFRm NSCLC in relation to involvement in their complex treatment decisions; the factors that enable them to be actively involved in their treatment decisions, and what factors hinder or prevent their involvement. The information they need and want, and the specific content and format of that information. This study therefore aimed to explore the experiences of patients with EGFRm NSCLC to identify the factors that facilitate and inhibit their involvement in decision-making, and to characterise the type(s) of information that can be helpful in this process.

Material and Methods

Design

The study used a mixed methodology with an online Bulletin Board where patients logged-on and answered qualitative and quantitative questions about their experience of involvement in treatment decisions for their EGFRm NSCLC.

Patients and Recruitment

Patients with EGFRm NSCLC were recruited via the United Kingdom (UK) Facebook group for a patient organisation, EGFR Positive UK. Membership includes patients across the UK. Eligible patients were adults (≥18 years), currently living in the UK and had been diagnosed with EGFRm NSCLC within the last 5 years. All patients provided informed consent for the study, including publication of anonymised responses and direct quotes, and received remuneration for their time. The aim was to recruit approximately 25 patients, based on qualitative research indicating that saturation is often achieved within 16–24 participants in relatively focused studies, while allowing sufficient breadth to capture diverse experiences of shared decision-making.²⁰

Data Collection

Eligible patients were invited to log onto the online Bulletin Board and answer questions about their experience at their own convenience over a 2-week period in December 2024. The questions were co-developed with the patient organisation to ensure they were appropriate and used language that this group of patients commonly uses when talking about their cancer.

All responses were anonymised and private; patients could not see each other’s answers to the questions and could not communicate directly with each other, thereby minimising the potential for peer influence on responses.

A mixture of structured qualitative (requiring free-text responses) and quantitative (rating scales, selection from a pre-defined list etc.) questions were included to engage patients and provide a rich data-set. All quantitative questions also provided an opportunity for patients to give a qualitative explanation/rationale for their rating or selection. Moderators with expertise in behavioural science and patient communication reviewed answers on a daily basis in order to follow-up on patients’ responses where necessary for clarification, or when answers were incomplete, and to provide daily adverse event monitoring and reporting.

Questions focused on patients’ experience of discussions with their doctor about treatment options including: what was discussed, how was information presented, how involved they felt they were in the treatment decision and whether this met their expectations/preferences.

Data Analysis

Descriptive statistics (in the form of frequency information) were calculated for quantitative data. For qualitative data, a thematic analysis informed by a critical realist ontology was conducted. Consistent with a critical realist perspective, participants’ accounts were treated as reflecting experiences of real-world clinical interactions and treatment decision-making processes, while recognising that these experiences are interpreted through individual perspectives and contexts. Analysis therefore moved beyond simple description of participants’ accounts to consider the contextual factors that appeared to facilitate or constrain involvement in treatment decision-making, including communication practices, information provision, understanding of EGFRm NSCLC, and opportunities to express treatment preferences.

Analysis began in parallel with data collection so that thematic saturation could be evaluated. Two trained researchers independently coded statements of interest and identified recurring patterns and themes. Notes were written throughout to capture analytic reflections and link emerging interpretations to existing literature. Data were compared across transcripts/responses to refine and consolidate themes. Researchers discussed and reconciled their findings to enhance reliability and minimise bias. Thematic saturation was achieved within the sample of 28 patients.

Ethical Considerations

The study was conducted according to the guidelines of the Declaration of Helsinki.²¹ The study protocol was reviewed by WCG Independent Review Board, approval number 45953789. Patients participating in this online qualitative/quantitative survey research responded to an advert placed on the Facebook Group page of an independent patient support organisation called EGFR Positive UK. They were not recruited via a clinical institution or a healthcare professional and neither AstraZeneca nor the Patient Organisation has an internal Research Ethics Committee or IRB. The protocol and study materials were therefore submitted to an independent IRB. All participants gave written, informed consent to participate in this research conducted via an online Bulletin Board. All participant responses were anonymized, private and not visible to any other participants or anyone other than the Hamell researchers.

Results

Sample Characteristics

Twenty-eight patients with EGFRm NSCLC logged onto the platform and answered the questions over a 7-day period. Most (71%, n=20) patients were diagnosed with Stage 4 cancer, three (11%) were Stage 3 and two (7%) were Stage 2. Three patients (11%) did not specify what stage their lung cancer was; one because they did not know.

Patients were aged between 30 and 79, but more than half (57%, n=16) were between 50 and 69 years old. Only one participant was younger than 40 years old. Most (93%, n=26) self-identified their ethnicity as White British.

Just over half of patients (56%, 15/27) felt involved in treatment decisions for their EGFRm NSCLC, 10/27 (37%) patients did not feel involved, 2/27 (7%) patients were ambivalent and one patient did not answer this question. Three of the 10 patients who did not feel involved described feeling emotionally distressed at the time of diagnosis and unable to contribute to any treatment decisions, preferring and trusting their doctors to make the decisions. However, over time, as the initial shock receded, they wanted to be more involved in the discussions and decisions about their management and treatment.

My diagnosis was such a shock, and I have never known anyone else close to me to have cancer. I did not know how I needed to advocate for myself as a patient and what questions I should be asking. [Participant 015]

At the time I felt I needed to follow whatever advice and recommendations made by my oncologist, after all, he had the expertise! [Participant 037]

Mixed Methods Thematic Analysis

Theme 1: Feeling Informed and Supported Enables Involvement

Of the patients who felt involved in their treatment decision, all reported that the information they received about treatment options was easy to understand and they felt they had sufficient information to make decisions about their treatment (Figure 1). Most patients in this group (67%, n=10) reported the information their doctor had given them had been comprehensive and complete and answered all their questions. However, one third of patients (33%, n=5) felt there were still things their doctor had not told them, that patients wished they had (Figure 1).

Figure 1.

Patients who felt involved in treatment decisions: perceptions of communication with their doctors about treatment for their EGFRm NSCLC (n=15).

Mirroring the quantitative data, patients who felt involved in their treatment decisions described open, informative interactions with their doctors. They emphasised that clear, accessible information and opportunities to ask questions were central to feeling confident and included in decisions. Receiving information they could understand and apply to their own situation also fostered involvement and reassurance.

[What the doctor did that made them feel they participated in the treatment decision] Answering questions about evidence of effectiveness of each option. Making it clear that if I felt really bad on [treatment] I could stop. [Participant 016]

Patients valued being given sufficient, comprehensible information about the purpose and effects of treatment, its side effects, and practical implications for everyday life. Those who felt fully involved in their treatment decision also described their sense of involvement as closely tied to trust and partnership with their clinical team:

I felt very confident in my oncologist and he gave me opportunity to have more information. [Participant 018]

I fully trust in the choices made by my oncologist. [Participant 023]

However, some patients felt informed, but noted that limited treatment options meant there was no real opportunity for shared decision-making.

Feel like I was given good information about the treatment but no shared decision-making as only one treatment on offer. [Participant 05]

For these patients, involvement meant understanding and accepting the rationale behind recommendations, rather than actively selecting between alternatives.

Theme 2: Barriers to Involvement

A number of factors prevented patients from feeling involved in the decision about the treatment they would receive for their EGFRm NSCLC. Half (50%, n=5) were not asked about their treatment preferences. Some patients (40%, n=4) did not feel they had received enough information to make a decision about treatment options (Figure 1) and 60% (n=6) said there were things they wished their doctor had told them, that they had not (Figure 2).

It would have been beneficial to know of the side effects of the chemotherapy treatment before I received treatment, as I could have prepared myself better. [Participant 020]

Figure 2.

Patients who did not feel involved in treatment decisions: perceptions of communication with their doctors about treatment for their EGFRm NSCLC (n=10).

Even when they had received information, half of patients (50%, n=5) reported that it was not easy to understand (Figure 2).

Key sub-themes around the barriers to involvement in treatment decisions from the qualitative data are shown in Table 1. Patients reported being confused about medical terms used by their doctor that had led to misunderstandings about treatment options and having a lack of understanding about what EGFRm meant, including what impact their EGFR status had on their treatment options as well as their prognosis. Many patients reported that they had not been explicitly told they had EGFRm NSCLC and some were not told what stage their cancer was.

At diagnosis I wasn’t told what stage it was, and for over a year I thought I was at stage 2 because the letter from my consultant to my GP, referred to my condition being T2aNOM1c albeit Metastatic. Obviously I didn’t have the medical knowledge to correctly interpret this code and It was only in a subsequent letter about 14 months later, that the term Stage 4 was used. ….However, my Oncologist has never discussed the stage with me face to face and to be honest, I haven’t been brave enough to bring it up especially as my husband accompanies me to the appointments. [Participant 07]

I would have liked to have been told my cancer stage - and what that meant in terms of the severity of cancer and the fact that meant my cancer was incurable. I would have liked to have been told this verbally in my meetings with my oncologist, and also would like to have had it written down in my clinic letter. It’s often difficult to take in information during meetings, and having written confirmation of what was discussed is helpful. [Participant 015]

Table 1.

Key Sub-Themes Relating to the Factors Inhibiting Patients’ Involvement in Decisions About Treatment Options for Their EGFRm NSCLC

Sub-Theme
Confusion/lack of understanding of medical terms	“I am still not fully clear (it’s a question to ask!) where my tumours are. These are mentioned in the letter to the GP, but I do not understand the medicalese and a simple diagram and explanation would be helpful.” [Participant 013]
A lack of information about EGFR	“No one at any time actually explained what EGFR lung cancer meant, I have had to get the info. myself and through the EGFR charity.” [Participant 017] “I was not told verbally that I was EGFR-positive I was told only that during an aborted operation to remove the tumour it was found to have metastasised and that I now had metastatic adenocarcinoma with 9 nodules testing positive that the lobectomy had been abandoned and the performance status was poor.” [Participant 029]
Treatment information that was not personalised	“I felt faceless and anonymised.” [Participant 020]
A lack of information about the potential implications/impact of treatment	“I wish I had known more about the implications of having a lobectomy and the effects it would have on my future quality of life.” [Participant 017] “I was not told that some people have chemotherapy or radiotherapy when they start their TKI, and that that can possibly lead to a longer PFS on first line treatment. I wish we had had a discussion about these options.” [Participant 015]
Feeling too emotionally overwhelmed by the diagnosis to take in information about treatment	“My diagnosis was such a shock, and I have never known anyone else close to me to have cancer.” [Participant 015] “It is very overwhelming having a Stage 4 diagnosis and I was feeling very unwell at this point so was just desperate to start treatment.” [Participant 05] “At that stage I was like a rabbit in headlights and wouldn’t have known what to ask.” [Participant 07]
The doctor as expert, best placed to make the treatment decision	“I wasn’t involved in the decision, because the decision was made by doctor who said it would be the best possible treatment for me.” [Participant 020] “I trusted I was being given the best option for me.” [Participant 07] “I was happy just to be told this was the best option and not have to consider the others.” [Participant 011] “I trusted my doctor would put me on the right treatment, and did not realise there would potentially be more than one option. There was no discussion about any preference I might have.” [Participant 015] “At the time I felt I needed to follow whatever advice and recommendations made by my oncologist, after all, he had the expertise!” [Participant 07]
No opportunity to be involved	“At my first meeting with an oncologist. I wasn’t offered any options, just chemo followed by radiotherapy.” [Participant 037] “I was never offered any options I was just told that this is what had been advised by the senior oncologist that I had spoken to on the day I was given the diagnosis.” [Participant 029] “I was never really given options. I was told that doing nothing was not an option. I was told that surgery was what was happening.” [Participant 017]
No awareness/expectation that patients could be actively involved in treatment decisions	“I did not know how I needed to advocate for myself as a patient and what questions I should be asking.” [Participant 015]

Confusion, lack of understanding and lack of awareness were exacerbated by the emotional shock of their diagnosis that left patients feeling too overwhelmed to take in what information their doctor had given them.

Another barrier to involvement in treatment decisions was that patients did not fully understand how treatments could affect their current and future quality of life, partly because the information provided was not personalised to their situation. This meant that patients were limited in their ability to understand what outcomes they could personally expect, what side effects they might experience and how treatment would impact their daily and future lives. Some patients expressed frustration about the lack of information and regret that they had not been able to be more involved in their treatment decisions.

Theme 3: Information That Empowers Decision-Making

Across participants, several references to the information viewed as most helpful in supporting decision-making were identified. These included information about: treatment effectiveness and likely impact on prognosis; how the treatment works; effects on daily life and ability to maintain normal activities; and potential side effects and how they could be managed. Patients described this information as enabling them to anticipate challenges and maintain a sense of agency and normality. These sub-themes are summarised in Table 2.

Table 2.

Key Sub-Themes Relating to the Information That Patients Reported Was Most Important in Helping Them Feel Involved and Able to Make a Decision About Their Treatment

Sub-Theme
Treatment effectiveness and impact on prognosis	“It was helpful being given trial data (I have a medical background so needed to understand evidence).” [Participant 05] [was told by the doctor that treatment] “would prolong my life from 12 months without treatment to 3 years.” [Participant 01]
How treatment works	“He advised me that these two treatments would firstly mop up any unseen cancer cells.” [Participant 018]
Impact of treatment on daily life	“The most important thing they said was that the side effects were not as bad as chemo and some people even seemed to have none, and that I should carry on with normal life/working.” [Participant 014] “I have young grandchildren and a large family, so it was really important for my mental health that I could participate in their lives as normally as possible.” [Participant 023]
Possible side effects and how they could be managed	“On starting [treatment], I was also given a ‘just in case’ selection of creams to help with skin rash, a shampoo to use should I get a reaction on my scalp, medication to combat an upset stomach and phone numbers to contact my lung cancer nurse specialist directly should I have any other issues.” [Participant 023] “I was [told] about any possible side effects for both treatments.” [Participant 18] “I was provided with full information about [treatment], the regular blood tests I would need to have as a means of monitoring, and the potential side effects.” [Participant 07]

Theme 4: Communicating Effectively with Lay Language and Visual Aids

Patients emphasised that how information was presented mattered as much as what was presented. Visual tools (such as annotated diagrams, sketches, or scan images) helped them understand their condition and treatment, making complex information concrete. When used, these enhanced patients’ sense of involvement, enabling information to be personalised so that it was directly relevant and answered patients’ specific questions. These visual aids did not have to be sophisticated or complex to have an impact. Patients reported that simple, hand-drawn diagrams and charts helped them to understand their condition and treatment more easily than verbal explanations that often included unfamiliar medical terminology, and that the visual aid made it easier for them to recall the information.

When I was changed from a respiratory consultant to an oncologist, on my first visit with Dr M she showed me the images of my chest and lungs captured by the CT scan then showed me images of a scan from a healthy patient. The doctor was able to show me why my diagnosis was inoperable and what she hoped treatment could do for me. On treatment options, the doctor gave me hand written treatment paths, with a what-if type map for want of a better description. If treatment A didn’t work we could try plan B etc, she was writing them as we spoke and would add to them based on questions I was asking her. [Participant 023]

I was shown a drawn chart of how long the average time the medication was usually effective for. The drawing was simple but clear and [more] helpful than all the big words. It was good to see visually and I still remember it more than all the words and new language I was facing. [Participant 021]

Whilst patients valued being shown their lung scans, they felt that drawings would have been helpful to supplement and explain the images.

Drawings as well as digital images of my scans would have been very helpful. [Participant 027]

Lung scans provide an instant visual “proof” of the extent of their cancer, and, whilst patients find the scans helpful to their understanding of their cancer, some patients need time to absorb their diagnosis before viewing the scans.

I was asked if I wanted to see my scans but I declined at that point [diagnosis] - felt ready to see my scans at first review appointment. [Participant 05]

The consultant did offer to show me the CT scan images but as I was feeling so vulnerable and poorly at the time I declined. I thought they might upset me all the more! [Participant 09]

However, less than half of all patients (43%, 12/28) reported that their doctors used visual aids with them.

Patients also expressed a strong preference for plain, non-technical language when discussing treatment effectiveness. Many found the medical terms used to describe efficacy difficult to understand. Whilst most (86%, n=24) understood the term “progression-free survival”, 43% (n=12) did not understand what was meant by “overall survival” and 86% (n=24) did not understand “overall response rate”. The distinction between overall survival (OS) – wanting to live as long as possible, and progression-free survival (PFS) – inferring a better quality of life, were important to patients who had different priorities and preferences for treatment outcomes; half of patients (50%, n=14) would prioritise OS over PFS. However, this distinction was rarely discussed by their doctors when presenting treatment options; 75% (n=21) of patients reported that the concept of PFS was not mentioned when discussing treatment options with their doctor.

Furthermore, patients reported that unfamiliar medical terminology was difficult to understand and inhibited their ability to fully comprehend what they were being told about their cancer, prognosis and treatment options.

I had terms like shadows, lesions, nodules, adenocarcinoma, resection, bronchoscopy and lobectomy all used at my very first meeting with a respiratory consultant as he discussed my results with me and some students who were also present in the room. I had to look up most of the terms afterwards. For me it would have been easier to digest if all those things were put to the side and the term tumour or cancer was used from the outset. [Participant 023]

Almost all patients 96% (27/28) specifically stated that they would like treatment effectiveness described in lay language to inform their treatment decisions.

When I get to the point of having different treatment options available and not just one clear winner I would like to know more about effectiveness, side effects and how they compare. I’d also like to know how they work differently to each other and success rates. [Participant 011]

I know from the EGFR+ charity group that there are pros and cons to further treatments and it would be useful to be able to read these in plain language. [Participant 013]

A lot of medical papers are rather obscure, you have to dig deep into them to understand the data and what it means in real life. A clear simple explanation would be helpful. [Participant 027]

Discussion

This study explored the experiences of patients with EGFRm NSCLC to identify factors that support and inhibit their involvement in treatment decision-making, and to characterise the types of information that patients find helpful for this process. This was a small sample of self-selected patients with limited diversity so the findings are descriptive, nevertheless they highlight substantial variability in patients’ perceived involvement, in line with earlier work showing that although many cancer patients wish to be involved in shared decision-making, many do not perceive themselves to be as involved as they would like.^16,17,22,23 Our findings are broadly consistent with the principles of shared decision-making described in Elwyn’s Three-Talk Model,⁸ particularly the importance of collaborative discussion of treatment options, eliciting patient preferences, and fostering a supportive partnership between patients and clinicians. Patients who felt involved in treatment decisions commonly described elements of effective Team Talk, including opportunities to ask questions, supportive communication and a sense of partnership with their clinical team. In contrast, barriers to involvement were most apparent during Option Talk and Decision Talk. Patients frequently reported difficulties understanding treatment information, prognostic terminology and treatment trade-offs, limiting their ability to evaluate options, while others described not being asked about their preferences, reducing opportunities for preference-based decision-making. Whilst these findings confirm much of the previous research on shared treatment decision-making (including patients’ preferences for involvement in treatment decisions, the perceived barriers to involvement, and the language, discussions and communication aids that facilitate participation) they also highlight the specific needs of patients with EGFRm NSCLC. In particular, patients need to understand their condition and what their treatment options actually offer so that they feel empowered to have greater control over their lives and futures.

Variability in Preferences for Involvement

While most participants valued active participation, a small number of patients preferred a more passive role in treatment decision-making, believing that the doctor, with their expertise and knowledge, was best placed to make the decision on the patient’s behalf. This is consistent with the variability in patients’ preferences for shared decision-making identified in previous studies, with some patients preferring a passive role, despite the increasing trend for involvement in treatment decisions^16,17 and highlights the need to take these differences into account so that the clinical approach can be tailored to patients’ needs. This is especially important as previous research has demonstrated a disconnect in expectations between doctors and patients and a discordance between patients’ preferred and perceived role in treatment decisions.^16,17 Studies consistently highlight a mismatch between physicians’ assumptions and patients’ preferences regarding decision-making in NSCLC. Dwyer Orr et al found that while over half of doctors believed patients preferred physician-led treatment decisions, the majority of patients (77%) instead favoured a collaborative approach: either shared decision-making or making the final choice themselves after discussion with their doctor.¹⁸ This study also revealed misalignment in treatment priorities: patients placed greater value on quality of life, whereas physicians ranked it lower, underscoring the importance of explicit dialogue about patient values and preferences.¹⁸ Similarly, a qualitative synthesis of 31 studies on cancer treatment decision-making reported a median discordance of 30% between patients’ preferred and perceived roles, with the greatest gap among those desiring a shared role (42%).¹⁷ In NSCLC specifically, observational data from adjuvant chemotherapy decision-making showed a 19% overall discordance, highest among patients seeking an active role (27%).²⁴ Collectively, these findings point to persistent unmet needs for more patient-centred and participatory decision-making processes in NSCLC care.

Factors Supporting Patient Involvement

Patients who described feeling involved in decision-making reported being given clear, sufficient information and having opportunities to ask questions and deliberate. They emphasised the importance of trust in their clinicians, perceiving that explanations were tailored to their situation and that information about treatment purpose, likely outcomes and side-effects, was explicit. These findings resonate with prior studies suggesting that high-quality information, good communication processes and a sense of partnership are central to shared decision-making in oncology.^23,25,26 Further, our findings support the notion that involvement is less about an abundance of options and more about having meaningful dialogue and being heard. This mirrors previous work which highlights that patients often define “involvement” as feeling heard, respected, and supported in understanding their situation, even when the ultimate decision is clinically straightforward,²⁷ and which emphasises that autonomy in complex cancer settings often coexists with guided recommendations.²⁸ Even where options are limited, clinicians may still promote involvement by explaining the rationale for recommendations, discussing implications for quality of life, and inviting preference expression.

By contrast, patients who were not involved in treatment decisions expressed frustration, uncertainty, and reduced trust in their care. Several sought external information sources to fill these gaps, including Google and Facebook searches. This can be problematic as previous research into cancer information-seeking behaviour has highlighted that online searches are often the most common way to garner additional health-related information, but this can sometimes lead to confusion or misinformation.²⁹ Without medical knowledge, it is difficult for the general public to differentiate between reliable and unreliable or misleading health information and they are often seduced by the visual appeal of a site regardless of the accuracy of its information.³⁰ The availability and profile (i.e being identified in online searches) of reputable sources of online information such as the NHS, hospital websites and patient organisations, is essential to counter this misinformation.

Barriers to Patient Involvement

Barriers identified in this study (lack of opportunity, insufficient information, medical jargon, and poor timing) mirror themes in existing shared decision-making literature.^23,31,32 Many patients struggled to understand terms such as “progression-free survival” or “overall response rate”, consistent with evidence that overly technical language and abstract statistics hinder comprehension and informed choice.³³ For several participants, the emotional shock of diagnosis compounded these challenges, leaving them too overwhelmed to engage with complex information, aligning with research into how anxiety and cognitive overload diminish the capacity for shared deliberation.³⁴ However, as others have argued, patients’ readiness to engage in shared decision-making is dynamic and may increase once the initial shock subsides.^35,36 From a clinical perspective, this suggests that supportive strategies such as repeated conversations, written summaries, and follow-up opportunities may help patients regain a sense of agency and process information at their own pace. The importance of sharing sufficient information about treatment options and ensuring patients understand potential side effects is very well-established. Studies have repeatedly shown that in lung cancer, lack of information and poor understanding of side effects adversely affects patients’ quality of life and psychological well-being.³⁷

Some doctors may limit the information they share out of concern that patients will misunderstand or be distressed by prognostic uncertainty, echoing earlier findings that clinicians perceive shared decision-making as difficult to achieve because of information imbalance and communication challenges.^27,38 A recent study of shared decision-making in NSCLC suggests that clinicians still perceive these as barriers to patients’ fully-informed involvement in treatment decisions.³⁹ In this study, although more than 60% of clinicians reported always using shared decision-making in their clinical practice, more than 60% also thought that the clinician can always or often decide for patients how the benefits and risks of treatment should be weighed, and 65% of pulmonologists reported that they never, or only sometimes discussed all the disadvantages of treatment with patients. This paternalistic tendency can unintentionally reduce patient empowerment. As seen here, patients valued transparency, even when options were few, because it allowed them to make sense of their experience, manage their expectations and maintain a sense of agency.

Types and Formats of Information

Patients emphasised that how information is communicated is as important as what is communicated. Clear explanations delivered in lay language, supplemented by visual aids such as hand-drawn diagrams, graphs, or annotated scans, enhanced understanding and recall. These findings are supported by prior research showing that visual tools improve comprehension and help translate complex concepts into personally meaningful terms.^40–42 Moreover, patients appreciated when clinicians personalised explanations (for instance, relating information to their daily lives or the experiences of other patients). In contrast, purely verbal or heavily statistical discussions often left patients confused and disengaged. Furthermore, the timing of such materials mattered: some patients preferred to delay viewing scans until they felt emotionally prepared, indicating the need for sensitivity in how and when such tools are deployed.

The use of plain language and visual materials does not trivialise medical content; rather, it bridges the communication gap and supports patients’ emotional readiness to engage. Patients overwhelmingly valued communication that used plain, non-technical language, yet felt respected and not patronised. Clear explanations of treatment mechanisms, expected side effects, and comparative effectiveness were seen as empowering. This supports prior research showing that plain-language communication improves satisfaction, trust and decisional confidence.⁴³ Using a structured decision tool within the consultation to present this information, heightens patients’ perceptions of decision effectiveness and increases their satisfaction with the decision, decreases uncertainties about their health, reduces anxiety and improves health outcomes and quality of life.^44,45

Earlier work has similarly demonstrated that the way clinicians describe prognosis and treatment effect can strongly influence patients’ understanding and subsequent decisions.³³ However, the confusion around PFS and ORR terminology points to an unmet need in oncology: the translation of statistical endpoints into meaningful, patient-centred concepts. Ensuring patients have adequate, accessible knowledge of the available treatment options (including when there is effectively only one) helps prevent perceptions of exclusion and fosters trust.

Implications for Clinical Practice

Taken together, these findings suggest that achieving genuine shared decision-making in EGFRm NSCLC requires more than simply offering choice; it necessitates accessible, contextualised information delivered through supportive, empathetic communication. Although these are descriptive findings from a small group of patients who may not represent the preferences and needs of all patients with EGFRm NSCLC, the findings suggest there may be an opportunity for clinicians to facilitate better shared decision-making by assessing each patient’s desired level of involvement; and explicitly exploring patient values regarding quality versus quantity of life. They could also ensure patients understand not only what treatments are available, but what they mean for everyday life and future expectations. Practical recommendations include the use of simple visual tools, avoiding unnecessary technical jargon, providing written summaries or decision aids, and revisiting discussion in follow-up visits. Implementing these approaches could narrow the gap between patients’ preferred and actual roles in decision-making and support better patient experience and informational outcomes.

Strengths and Limitations

The predominantly qualitative nature of this study, while valuable for depth of understanding, means the sample size was relatively small and may not represent all patients with EGFRm NSCLC. Although efforts were made to include a diverse sample, participants were predominantly White British, and cultural differences in communication preferences or trust in medical authority may not be reflected. In particular, patients of East Asian ethnicity in which EGFRm NSCLC is more common than in Caucasian patients, were underrepresented in this study and may have additional needs not captured here. In addition, diagnoses were self-reported; however, all participants were recruited through a patient organisation specifically for individuals with confirmed EGFRm NSCLC, lending credibility to the sample. Social desirability bias in reporting experiences of consultations with their clinical team may have resulted in an overestimation of the proportion of patients who felt involved in their treatment decisions. However, none of this research was conducted face to face and all responses were anonymised, meaning less overt perceived pressure to report good experiences. Despite these limitations, the findings align with previous shared decision-making research and offer important insights into communication practices and patient engagement.

Conclusion

This study highlights the importance of involving patients with EGFRm NSCLC in treatment decisions, even when therapeutic options are limited. A small number of patients preferred a passive role however, amongst those who wanted involvement, patients who felt involved demonstrated better understanding of their disease and its implications for their lives and futures, and reported more positive emotional and relational outcomes. In contrast, those who were excluded or uninformed experienced frustration, uncertainty, and reduced trust. Providing clear, personalised, and timely information using plain language and simple visual aids empowers patients to participate meaningfully in decisions about their care. These communication practices may help bridge persistent gaps between clinicians and patients where they exist, fostering truly collaborative care in lung cancer. Further research to validate these findings in a broader group of patients, including a more ethnically diverse population, and to test interventions to improve shared decision-making would be valuable.

Funding Statement

This study was funded by AstraZeneca.

Disclosure

VH reports no conflicts of interest in this work. GG is an employee of AstraZeneca.