Eliciting the views of left breast cancer patients' receiving deep inspiration breath hold radiation therapy to inform the design of multimedia education and improve patient-centred care for prospective patients
Abstract
Introduction
The currently accepted best practice radiation treatment for left breast cancer patients is Deep Inspiration Breath Hold (DIBH) where patients hold a deep breath to reduce late cardiac and pulmonary effects from treatment. DIBH can be challenging and induce or exacerbate anxiety in patients due to the perceived pressure to reduce radiation treatment side effects. This study explored the experiences of patients treated with Deep Inspiration Breath Hold Radiation Therapy (DIBH-RT) to improve patient-centred care and inform the design of multimedia educational tools for future patients undergoing DIBH.
Methods
This descriptive qualitative study was underpinned by a social constructivist approach to create new educational and patient care approaches based on previous patients' experiences. Semi-structured interviews were conducted with patients who had completed DIBH-RT for breast cancer. Data was analysed with reflexive thematical analysis.
Results
Twenty-two patients were interviewed with five key themes identified: (1) informational needs, (2) care needs, (3) autonomy, (4) DIBH performance influencers and (5) other centredness. Recommendations were derived from these themes to improve future treatments of DIBH patients. These recommendations revolved around improvements to education, patient-centred care and strategies to improve self-efficacy with breath holding.
Conclusion
Patients offer a wealth of knowledge regarding their lived experiences with treatment which can enhance future patients' experiences if incorporated into their education and care. Eliciting patients' views of their DIBH-RT treatment highlighted the need to improve patient self-efficacy with DIBH through familiarity with their planned treatment from new multimedia education, and foster patient care to enhance their experience.
Introduction
Breast cancer is the most frequently diagnosed cancer in Australia1 with left breast cancer more common than right.2 Current best practice radiation therapy treatment for left breast cancer is Deep Inspiration Breath Hold Radiation Therapy (DIBH-RT) which offers numerous advantages for patients.3, 4 When a deep breath is taken and held during treatment, the heart is distanced from the target volume (chest wall and breast) reducing cardiac dose and the lungs inflate lowering the pulmonary dose.5 Both cardiac and pulmonary side effects are late, emerging years after radiation therapy completion.6 Reducing these side effects is important as the long-term impact of treatment is the highest concern reported by breast cancer patients receiving radiation therapy.7 Another advantage of DIBH-RT is the immobility of the treatment area with suspension of the breast in breath hold negating dosimetric uncertainties observed with moving target sites.8
DIBH-RT presents a challenge for patients and may exacerbate their anxiety.9 With DIBH-RT, the onus is on patients to improve their health outcomes by breath holding, which can induce anxiety and issues executing breath holding.9 Anxiety can be exacerbated by unmet informational needs,10, 11 doubts over self-efficacy9 and fear of treatment,12, 13 resulting in people taking short, shallow breaths. Anxiety may manifest due to radiation therapy itself, as the ionising radiation cannot be seen nor immediately felt.14 Due to the intangible nature of radiation therapy, it can be difficult for radiation oncology health professionals to meet patients' informational needs.15 Patients may have difficulty understanding treatment from the education provided, which can contribute to a poorer treatment experience and higher levels of anxiety.15, 16 The most at-risk for unmet informational needs are those with lower levels of health literacy.17 When patients do not understand their treatment, they relinquish control to health professionals.18 Unmet informational needs also impact on individuals' capacity to perform their role in treatment5 with health literacy impacting self-efficacy.19, 20 DIBH-RT requires high cooperation and self-efficacy, with the patient engaging in numerous sustained breath holds during treatment.5, 9
There is little published research pertaining to radiation therapy patient education informed by the views of patients. Where education was informed by patient views, information better met their needs.21 Most literature regarding patient education does not report its design and is often developed by radiation oncology health professionals (ROHPs) alone. ROHP developed radiation therapy education may not be easily understood by patients. Only 40% of Australian adults have the health literacy skills to understand health information.22
To improve patient health literacy, guidelines from the Health Literacy Framework recommend healthcare staff communicate with patients, families and carers in ways they understand.23 The Health Literacy Handbook recommends pitching written health information to a year 6 to 8 reading level.24 Meeting the informational needs of patients treated with DIBH-RT is critical for their active participation and improved health outcomes.5, 9 Education, informed by patient's lived experiences, could improve delivery of information that is comprehensible, patient focussed and psychologically safe, to meet patients' needs.13, 25, 26 While education based on consumer input has been used elsewhere successfully,27, 28 it has rarely featured in radiation therapy. This lack of investment continues despite knowledge that unmet informational needs lead to poorer health outcomes, particularly for lower health-literate populations and those from rural areas.18, 25, 29 In most cases within radiation therapy, patient education is provided from the ROHP perspective with no indication of input from patients.
We aimed to explore experiences of patients treated with DIBH-RT to improve patient-centred care and contribute to the design of multimedia educational tools for patients undergoing DIBH-RT.
Methods
This cross-sectional qualitative study was designed with exploratory, descriptive features. The study was underpinned by a social constructivist theory seeking to inductively derive theories based on participants' experiences. Themes then guided patient education and care strategies for future DIBH-RT patients. The study was approved by the Northern NSW and the Mid-North Coast Local Health District Research Office as a low-risk project (approval number: QA396).
Research team
Patients were interviewed by the research lead (KD), an experienced radiation therapist employed within the North Coast Cancer Institute, who was supervised by the Rural Research Capacity Building Program, NSW Health. KD, a PhD candidate investigating DIBH-RT at Curtin University, was supervised by a team of experienced qualitative researchers within radiation therapy/health (GH), psychology (MOC, HD) and radiation oncology (DN). The researchers recognised recently DIBH-RT-treated patients could share insights to improve educational resources for future patients.
Sample
Maximum variation purposive sampling was utilised with participants recruited from either North Coast Cancer Institute (NCCI) in Lismore or the Mid-North Coast Cancer Institute (MNCCI) in Port Macquarie in NSW, Australia. All women who had commenced DIBH-RT using Surface Guided Radiation Therapy (SGRT) for treatment of left breast cancer within 6 months of study commencement were invited to participate to ensure recency of views. Any participants who commenced DIBH-RT, but were later changed to free-breathing RT, were also invited to participate. Translation services were available to participants if required.
Recruitment
Interested individuals were provided with a participant information statement, consent form and the interview questions. Patients were contacted at least 1 week following the estimated receipt of study details to determine their interest. An appointment for semi-structured interview (face-to-face or telephone) was scheduled after obtaining informed consent. No incentives for participation were provided.
Patients were assured that their participation or non-participation in the study would have no effect on their treatment or relationships with clinicians or other staff within the health service.
Procedure
‘What can we learn from the positive and negative experiences of previous patients treated with DIBH-RT?’
‘What education could we provide to patients to optimise their breath hold, self-efficacy and general experience?’; and,
‘What do patients want?’
| Question number | Question |
|---|---|
| 1 | What did you like best about your breath hold? |
| 2 | What did you like the least about your breath hold experience? |
| 3 | What information about your treatment would you have liked to have known before the planning appointment? |
| 4 | What helped you with your breath hold experience while you were in your planning appointment? |
| 5 | What did you find helped you with your breath hold experience while you were in your treatment appointments? |
| 6 | What did you do to manage your breath hold experience better? |
| 7 | Would you have been interested in relaxation techniques? |
| 8 | Would you have been interested in strategies to help you practice holding your breath? |
| 9 | Would there be any information you feel would be of benefit to future patients offered breath hold? |
Data analysis
Transcripts were managed using NVIVO v20 and Microsoft 365 Excel software v2305. Reflexive thematic analysis was conducted using Braun and Clarke's six phases of thematic analysis.30 Preliminary coding of the data was undertaken independently by KD with re-reading of transcripts for data familiarisation before initial coding and theme exploration, review, definition and naming. An inductive approach was used to ensure themes aligned with participants' experiences. The themes were refined through triangulation with a research mentor (GH) prior to scrutinization by the research team (HD, DN, MOC). KD wrote a summary of key themes, subthemes and quotes to illustrate and exemplify the themes that were discussed by the research team until consensus was achieved. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used to confirm comprehensive reporting.31
Results
Thirty participants from NCCI Lismore and MNCCI Port Macquarie, in NSW, Australia were invited to participate, 22 consented (73% response rate). Four interviews were conducted face-to-face and 18 via telephone from May to July 2021. Interview lengths varied between 4 and 20 minutes, with a mean length of 12 min. Recruitment ceased following thematic saturation, defined as no new information introduced after two further interviews. All participants were female with left breast cancer treated with DIBH-RT; ages ranged from 44 to 81 years, with a median of 64 years. Twelve participants were treated with tangents only, five were treated for breast or chest wall plus nodes, and five for whole breast plus boost. Of those who received chemotherapy, four were node-positive and four were whole breast plus boost; none received trastuzumab.
Thematic analysis generated five key themes: (1) informational needs, (2) DIBH performance influencers, (3) autonomy, (4) care needs and (5) other centredness.
Informational needs
This theme explored how the informational needs of participants impacted their experience with DIBH-RT and included the following subthemes: types of information (need for context, format and strategies), quality of information, processing information (receipt and recall of information) and scope of information (Table 2).
| Subthemes | Descriptor | Exemplar quotes |
|---|---|---|
| Types of information | Context: Having a clear understanding of why they needed to hold their breath gave participants a sense of purpose | ‘I knew that if I was breath holding, I was doing the right thing for my heart’. P03 |
| Format: While most participants found the written and verbal information provided adequate, others wanted additional audiovisual education tools as well |
‘I suppose I was just a little bit overwhelmed with all the machinery. I probably, if I'd had a little video of what was the procedure I wouldn't have been so intimidated by the equipment. I felt a little bit intimidated by all the machinery’. P01 ‘I think there should be more information about it in the book, more printed information about it in the book that you can read in. I think that a video or something like that would be good’. P05 |
|
| Strategies: Some participants wanted strategies to help them with breath hold |
‘It (strategies to help with breath hold) would have really helped. It would have cut the stress down a heap’. P18 ‘I think a lot of mature people would really benefit by that (relaxation strategies)’. P22 |
|
| Quality of information | Participants wanted decipherable information given in a way they could understand. | ‘But for many people it's a new experience. So, it would perhaps be great to have some kind of information on a lay person's level. That if you didn't quite grasp what the professional was saying, this is it in everyday speak. This is the process. This is how it works. This is why we're doing it. This is how it's going to function, and we'll be there supporting you throughout the process’. P19 |
| Processing Information | Receipt of information: Informational needs vary. Some participants wanted more information to help them through their breath hold treatment while others did not | ‘I don't think I needed to have any more information than what I did, because I think sometimes you can get overloaded, you can get overloaded with information’. P02 |
| Recall of information: recall was necessary to perform breath hold during treatment | ‘I was pretty well informed. It's just retaining the information’. P19 | |
| Scope of Information |
Some participants wanted to share their experiences with loved ones but could not, due to COVID-19 restrictions Patients also found being alone in the radiation bunker during treatment challenging |
‘I suppose you're just put on a machine and left to that if that makes any sense. It's just the isolation I suppose. Sometimes it's just like going through the whole, everything going through. You're just always this is what, I don't want to use it like you're a slab of meat, but you know what I mean? It's just the whole, it's sometimes you're left alone in you're just all, “Oh, this is shitty”. And I suppose it comes back to really being COVID because I could have nobody through chemotherapy so therefore, I could not have anybody there in radiation. I know I can't have anybody in that room, but to even share the experience or take my kids or my husband in and to say, “Hey, look at this machine. This is what it does, and this is how I lay.” I'm more of sharing the information and I couldn't do that’. P07 ‘Probably just being exposed and lying there by myself in a strange place. I think that was probably the worst side of it’. P04 |
Regarding the need for context, participants wanted to understand why they needed to hold their breath and why this was important for their treatment. Several felt a video would help with education to reduce their fear of treatment. Participants volunteered strategies that helped them to complete their daily DIBH-RT treatment, including practising holding their breath and exercising outside of treatment sessions. Participants reported both strategies directly improved their mental health and self-efficacy to complete daily DIBH-RT treatment.
Regarding the quality of information, participants wanted clear information about DIBH-RT. They wanted clear and concise instructions delivered calmly and reported a preference for staff to be confident in providing education. The need for information varied, with most participants reporting the information they received was adequate and did not overload them. However, some reported anxiety if they could not retain information or needed further information, clarity and reassurance.
During the COVID-19 pandemic, participants' support people or carers were not allowed to attend appointments, excluding them from information sessions. Several participants noted this exclusion from access to knowledge about treatment impacted their own mental health and that of their loved ones. Some participants noted they would have liked information accessible to their support network or family.
DIBH performance influencers
This theme explored factors influencing the ability to perform DIBH-RT daily during treatment. The subthemes for this category were: psychological status, physical status and pre-existing conditions or previous chemotherapy treatment (Table 3). Several participants noted feeling anxious, stressed and concerned about their ability to hold their breath during treatment, while some others were distressed about the treatment itself. Some participants talked about physical pain or discomfort when having to maintain their treatment position for too long. They cited discomfort with holding the standard treatment position for supine breast patients for too long, as it involves holding their arms up and behind them.
| Subthemes | Descriptor | Exemplar quotes from patients |
|---|---|---|
| Pre-existing conditions/previous chemotherapy treatment | Most found holding their breath was achievable. Some found it difficult due to pre-existing conditions such as smoking, asthma or recent chemotherapy treatment |
‘I found it difficult. I'm an asthmatic as well, so I did find it a little bit challenging’. P06 ‘… that I couldn't, yeah, just because I've been smoking since I was 14, I put it down to the bad lung capacity’. P19 ‘Yeah, with something, but I've been feeling breathy. Yep. I think it's leftovers from the chemo. It's some sort of dry throat that you get from chemo and it can make you cough a dry cough, yeah’. P21 |
| Psychological |
Some participants reported anxiety or fear prior to their breath holding for their radiation therapy treatment One patient opted to undergo psychology sessions to reduce her stress prior to her radiation therapy journey |
‘I think at least I think was in the very beginning, was that factor of the thought that I did have to hold my breath. That little bit of fear factor in the beginning’. P02 ‘Probably I would say it's almost like you get a little bit anxious leading up to thinking I hope I can do it properly on the day’. P03 ‘Just worrying about it in the first place. Once I actually got going there was no problem at all’. P05 ‘I think the anxiety that goes around it, around potential side effects. That's the worst thing for me’. P10 ‘I was quite stressed and not feeling the best mental state. And I think it was my oncologist who said to me, “You know, you're probably not going to feel great mentally.” And I went to speak to a psychologist that helped me’. P15 |
| Physical | Participants could be in physical pain or discomfort from being in the treatment position for too long or if they were uncomfortable or holding their breath for too long |
‘When you're lying on the bed and then you've got to put arms up like that and when you have to go and pull your arms out it's like my shoulder is quite sore’. P07 ‘It was hard to concentrate because my neck was sore, my shoulder was so sore, my upper arms were so sore, but I found the pain relief was so good’. P22 ‘Sometimes when the machinery was playing up, you might be in the same sort of static position for a while, which can be a bit uncomfortable when the muscles in the area that have had the treatment are static for a bit long, then you can get a bit of an ache’.P09 ‘I wouldn't want it to go on much longer than 30 seconds probably. Yeah, I think probably after a while it makes your chest tight. You get tight and probably slightly lightheaded’. P01 |
Other participants had pre-existing conditions negatively impacting their ability to perform breath hold, including asthma or sore throats from chemotherapy. Participants who smoked found breath holding difficult, with one reverting to free breathing as she was unable to consistently hold her breath for treatment. This participant noted anxiety coupled with her limited lung capacity as the reason she could not maintain breath hold. These DIBH-RT performance influencers impacted participants' mental health with adverse thoughts on their ability to perform DIBH.
Autonomy
Autonomy explored psychological paradigms where participants took control over their treatment through DIBH-RT and developed self-efficacy over breathing. The subthemes for this category were control and self-efficacy (Table 4). Several participants noted that throughout their cancer journey, they felt like passengers of their experience. Some viewed DIBH as an opportunity to take control over their treatment as treatment was activated only if they held their breath within the threshold required.
| Subthemes | Descriptor, quotes from patients | Exemplar quotes from patients |
|---|---|---|
| Self-efficacy |
Psychology: Patients who had confidence in holding their breath found it easy to hold their breath. Some patients needed to hold their breath first before they realised they could Some patients felt they could not do it if they had a negative experience. Strategies: Some patients opted for avenues to improve their self-efficacy for DIBH – this included yoga, breath hold practice, exercise and mindfulness |
‘Yeah, so every time after I had a bad one, I was more stressed than ever because I didn't want it to happen again, and I hate putting people out. It was really stressing me’. P18 ‘One day it would feel really super easy and you'd think “Oh I don't know what I was worried about” and other times you think “I can't do it”’. P03 ‘Well, I started going back to yoga. Well, that incorporated meditation and stuff as well, so yoga and meditation, and trying to hold my breath for certain periods of time on a stopwatch at home’. P18 ‘I was advised to practice, and I think that I had my yoga from many years ago to call on, I think that that was a benefit to me’. P1 ‘I tried doing a few exercises beforehand, holding the breath and everything else’. P6 ‘So I actually spoke to a psychologist and we did some mindfulness. And it was worse when I felt I got stressed at work and then I had to go and so I'd end up, I'd put myself in this nice spot in my head and if I could manage to relax and do that, I was fine’. P15 |
| Control | Some patients found that holding their breath gave them control or that they liked having that control over their body while others found holding their breath difficult to control |
‘Being able to control my breathing and having control over my body to the best extent I could’ (was the best thing I liked about treatment). P02 Having control. So for me the choice of having to do my own breathing. So that the experience for me was like having getting control back a little bit within the whole treatment process of having cancer. So the breath holding gave me that opportunity because of I knew how long I could hold my own breath. P08 ‘I found it difficult to sort of, I don't know, I just found it really difficult to keep my breathing controlled’. P19 |
Some participants developed self-efficacy over their breath holds. Regarding psychological aspects of self-efficacy, participants who felt confident in their ability felt they could perform breath hold during treatments. Conversely, when patients lacked confidence, they felt they could not perform breath hold. Strategies to improve self-efficacy suggested by participants included initiating exercise, yoga and mindfulness practices prior to treatment to help with DIBH-RT.
Impact of Radiation Therapists' care
This theme explored the impact of radiation therapists' (RT) care during DIBH-RT. The subthemes for this category were professional characteristics of staff, consistency of staff, feedback from staff and personal touches (Table 5). Participants wanted to feel cared for and there were certain qualities from staff that increased perceptions of care, including patience, friendliness and professionalism. Patients also reported a preference for consistency in the treatment team including having familiar RTs rather than unknown staff. Knowing the staff members reassured participants about their treatment, gave them a sense of safety and familiarity. Participants also appreciated positive feedback from their treatment team, which positively impacted their perception of treatment. Radiation therapy was deemed a daunting, isolating experience by some due to being alone in the treatment room. With regards to personal touches, several participants noted offers of a warm blanket or music helped their treatment experience.
| Subthemes | Descriptor, quotes from patients | Exemplar quotes from patients |
|---|---|---|
| Professional traits of staff and feedback from staff | Patients found the professionalism and communication from staff comforting |
‘Yeah, I mean what I liked the best was obviously the professionalism and friendliness of the staff who were assisting me. It was very non-invasive and non-painful’. P09 ‘… the fact that the staff knew what they were doing, and it made you relax a bit better’. P11 ‘… Well I think it was just that I was made to feel so much at ease, the way that the technicians spoke to me and kind of advised me, kept me informed all the time as to what was happening. Now that we were ready to go and all that sort of stuff, I think it just - the way that they made me feel at ease’. P05 |
| Consistency between staff | Consistency of information given by staff is important to patients and can mean that patients are secure in the knowledge given to them | ‘The different teams each day were all quite similar in meeting and greeting and the routine of getting everything ready was very similar regardless of which people were setting it up and so I suppose that familiarity or that routine kept it predictable and kept it easy to just relax and, yeah, to do it’. P12 |
| Personalised treatment | There are small but valuable add-ons that radiation therapists can give to improve the patient's treatment experience |
‘They (the radiation therapists) also offered you a blanket if you needed one. So, they make you as comfortable as they can in that scenario’. P09 ‘Maybe it wouldn't help everyone and maybe you'd have to talk to people about this, that just having some sort of calming music or something like that during the treatment in between the voice overs. Because sometimes there was music and it was not very relaxing or not for me anyway. I don't know. It would be nice to try to personalise that. I don't know how difficult that is’. P10 |
Other centredness
This theme explored how participants cared for others, particularly other patients (Table 6). The subthemes included impact on other patients, altruism and support network inclusion. Participants reported feeling the need to get their breath hold right every time to not impact others waiting for treatment and the department schedule. This perceived pressure sometimes impacted their ability to perform breath hold and caused distress during treatment set-up. Several participants reported altruistic motivations for engaging in this study, sharing recommendations to assist and benefit prospective DIBH-RT patients. Finally, participants reported a desire for their support network to be a part of the experience to understand their treatment journey and to improve all parties' mental wellbeing.
| Subthemes | Descriptor, quotes from patients | Exemplar quotes from patients |
|---|---|---|
| Impact on other patients | Some patients wanted to perform breath hold successfully to not impact on patients waiting for their treatment | ‘You know there's a waiting room full of people waiting their turn and you sort of thought well I know they've got to have their turn as well. I don't want to be encroaching on their day’. P03 |
| Altruism | All patients were willing to be interviewed for this study not to help themselves but to help others. Most patients gave advice that they found helpful to hold their breath for future patients |
‘Just go with it really. If you can do it, I think … Like I said at the start, it was something to focus on and take your mind off things or put your energy into getting rid of what the radiation was trying to destroy in a concentrated moment’. P04 ‘To know that if they're not in a good place, there's help out there you can get’. P15 ‘One, pain relief if needed. Two, go above the box, because they say, “Just go up to the top of the box,” and I did that, but as I explained it kept dropping. Whereas if I went above the box, it dropped a bit, which is normal, but then it stayed halfway. I think that's why I did so much better because I did it my way’. P22 |
| Support network inclusion | Most patients have a support network who they want to know and understand what is happening to them. If the patient's support network does not know and cannot understand the patient's journey, this can be isolating for the patient and impact on their mental health | ‘If I could've and it might be a big ask, but if I could've had and I had my family take me in. So if I had my husband maybe come in and view, not be there when it was happening, but to understand what's, because they had all those questions. What did the machine look like? How long did you hold your breath? What did you do? If they could have come in and go, “Hey, this is what happened. You can't be here, but this is what happened. You can't be here, but this is what happened.” Even to the point where my husband and for my kids saw me on the bed, then they would have got the understanding of, because then you have that communication after it and I think for families if they see it what you're going through, they understand a little bit so that would be me’. P08 |
Recommendations for radiation oncology health professionals to improve their DIBH-RT program
Further derivation of the themes formed the basis of recommendations for incorporation into the co-design of education and improvement of patient-centred care for future DIBH-RT patients (Table 7). These recommendations could assist radiation therapy departments in increasing patients' self-efficacy to achieve DIBH-RT for treatment.
| Area of Improvement | Recommendations | Possible outcomes to assess |
|---|---|---|
| Education | New radiation therapy information resources should be informed by previous patients' views and using multimodal approaches | Improvement in patients' understanding of information |
| Offer patients guided practice sessions for holding their breath as part of their education | Successful use of DIBH during treatment | |
| Give patients the choice about what information they would like. Chunking information into categories gives patients both choice while not overwhelming them with information. Timed information is also important to reduce information overload |
Knowledge of treatment Preparedness for treatment |
|
| Ensure education is accessible away from the department for both patients and their support network – numerous platforms exist such as YouTube |
Patient and support person engagement with educational material Knowledge of treatment Preparedness for treatment |
|
| Strategies to help patients' self-efficacy with their breath holding | Ask patients to practice their breath holding daily prior to their planning and treatment sessions in a mock treatment position | Successful use of DIBH during treatment |
| Recommend patients undertake exercise to improve their ‘breath hold’ fitness | Successful use of DIBH during treatment | |
| Provide patients with strategies to reduce anxiety |
Successful use of DIBH during treatment Delivery of treatment without interruption |
|
| During treatment, recommend to the patient that they use the breathing line as a visual aid to guide them with holding their breath | Successful use of DIBH during treatment | |
| Ask patients to take a slow breath in, rather than a steep intake, when holding their breath | Successful use of DIBH during treatment | |
| Patient centred care | Health professionals deliver information clearly and calmly with confidence in their knowledge to reassure patients |
Patient satisfaction with information delivery Reduce patient anxiety levels |
| Ensure pre-existing, co-morbid conditions are documented and information tailored to address the impact of these conditions on treatment and DIBH | Successful use of DIBH during treatment | |
|
Routinely ask patients about their comfort level during their planning session. Adjust position to alleviate this discomfort Document adjustments for inclusion in future RT sessions |
Successful use of DIBH during treatment Delivery of treatment without interruption |
|
| Gauge patients' receptiveness about controlling their own treatment (i.e. to activate/deactivate the beam when they hold/release their breath) |
Successful use of DIBH during treatment Delivery of treatment without interruption Patient satisfaction with treatment |
|
| Screen for anxiety and use a stepped care referral pathway to provide support tailored to the individual's level of need |
Reduce level of anxiety Successful use of DIBH during treatment Delivery of treatment without interruption |
|
| Screen for physical capacity to undertake DIBH-RT |
Improve patient comfort Patient satisfaction with treatment |
|
| Familiarity is important, prioritise having consistent core treatment team for each patient daily |
Successful use of DIBH during treatment Delivery of treatment without interruption Patient satisfaction with treatment |
|
| Ask patients about need for simple practical interventions to improve experience, for example, warm blanket, music of their choice |
Successful use of DIBH during treatment Delivery of treatment without interruption Patient satisfaction with treatment |
|
| Give patients positive feedback about their treatment and how they performed breath hold |
Successful use of DIBH during treatment Delivery of treatment without interruption Patient satisfaction with treatment |
|
| If the treatment is taking longer than usual, normalise the situation and ask the patient if they would like a break from their treatment position to reduce discomfort. When the treatment is taking longer than scheduled, normalise the situation for the patient with reassurance that they are not impacting on other patients with the length of time |
Improve patient comfort Patient satisfaction with treatment |
Discussion
We identified themes demonstrating the potential to both positively and negatively impact patient experience with DIBH-RT. Individuals who felt relaxed, pain-free and in control of their treatment reported more positive treatment experiences overall. Conversely, if patients were agitated, had high levels of distress, were uncomfortable and felt they had little control, their perceived treatment experiences were more negative. Those concerned about treatment outcomes reported feeling anxious about their treatment. It is important to address anxiety within this cohort as, along with fear of treatment, anxiety can lead to poorer breath holds or abandonment of DIBH-RT exposing individuals to a greater risk of long-term treatment effects.9, 13, 32 Our study participants affirmed feeling fearful of, and anxious about, their prospective DIBH-RT treatment.
Increased anxiety at times impacted participants' ability to perform sustained breath holds to the threshold required for treatment. Mayr et al noted anxiety levels in DIBH-RT patients and how they can impact their ability to perform breath hold.9 They addressed the impact of patient's anxiety levels on breath hold with breath hold training and cognitive-based therapy.9 Self-efficacy also impacted patients. Those who felt they could achieve breath hold reported a belief within themselves to perform breath hold successfully in the next treatment. Conversely, those who had low self-efficacy reported doubts regarding their ability to perform breath hold for subsequent treatments. This self-doubt, at times, did impact adversely on their ability to perform breath hold on their following treatment.
The focus on questions designed to guide recommendations to improve education and patient-centred care allowed contrasting of impacts and experiences. Participants who felt able to help themselves had a better experience and perceptions of self-efficacy with DIBH than those who did not. Participants who exercised and practised to improve breath hold fitness felt breath hold gave them control over their treatment. While there is a little literature regarding exercise, control and breath hold specifically for DIBH-RT patients, multiple studies show a direct relationship between exercise and lung function33-35 while others show the relationship between patient control and empowerment.36, 37 Additionally, participants who understood the overall purpose and impact of breath hold on their treatment and health outcomes used this as motivation to perform the breath hold well. While literature is limited on patient understanding of DIBH-RT and its use as a motivator for self-efficacy, literature from other areas demonstrates positive effects of health literacy on patient motivation.38, 39
Patients' fear, information overload and anxiety associated with treatment can be reduced by providing education that is easily understood. This is supported by previously published research which explored informational needs of radiation therapy patients.7, 13, 25, 40 Patients' confidence in their self-efficacy can be improved by positive feedback from radiation oncology health professionals and provision of strategies for breath hold.
Self-determination theory (SDT) provides a theoretical framework to explain the motivational dynamics affecting health behaviours, proposing humans have three innate psychological needs forming the basis for self-motivation and personality integration: competence, relatedness and autonomy.41 According to SDT, competence is using one's capacities and feeling effective; relatedness is feeling respected, understood and cared for by others; and autonomy is the perception of being in charge of one's own behaviour.41, 42 Our themes indicated participants were motivated by perceptions of autonomy or control experienced with DIBH-RT, with some feeling motivated by altruism or relatedness, expressing that they felt cared for and respected, or they wanted to help others by providing advice or contributing to the research. Others were motivated to complete DIBH to improve treatment outcomes. Awareness of individual motivators may assist ROHPs help patients with DIBH for improved engagement, self-efficacy and psychological well-being. Developing a two-pronged approach underpinned by SDT which includes provision of education about the rationale for DIBH-RT and guided exercises may help individuals develop their competence and feel autonomous, support them to successfully adopt DIBH during their treatment.
Patients felt distressed by the exclusion of their support persons from education sessions and wanted their support people to understand the treatment. COVID-19 restrictions limited opportunities to share this information with support networks. While these restrictions are now relaxed, multimedia resources accessible to patients, outside of the department, to share with support networks can mitigate these issues. Information, as an unmet supportive care need for patients and their families, was described by Thiessen et al, who recommended the dissemination of accessible, credible, applicable and positively framed education.43 Furthermore, enabling support persons to attend education sessions could contribute to patient motivation through relatedness of feeling respected, understood and cared for by those closest to them.
Other factors that impacted breath hold were pre-existing conditions such as lung capacity. Having an awareness of patients' pre-existing conditions prior to their planning and treatment sessions may help ROHPs tailor care to individuals. Other negative experiences included pain and discomfort from their treatment position which some did not disclose to ROHPs. Pain, discomfort and pre-existing conditions from chemotherapy and their effects on breath holding were also described by Mayr et al.9 Education, which shows that ROHPs deliver patient-focused care (i.e. caring and open), may help patients feel comfortable requesting breaks when pain and discomfort arise. ROHPs should use this knowledge to pre-empt issues with comfort and pain with open questions and a psychologically safe environment to elicit disclosures.
From the themes generated, we found patients wanted strategies to help with breath holding – this included practising the breathing technique required for their treatment and mindfulness sessions. It is well established that adults learn best with the education provided within a visual, audio, readability and kinesiology (VARK) framework.40 The VARK framework, with enhanced receipt and comprehension of the information received, is supported within the literature.40 It is likely to be helpful in developing education and training resources to support DIBH-RT in practice.
- Multimedia experiences re-enacting DIBH-RT planning and treatment sessions to provide familiarity with planned treatment,
- A multimedia explanation of the purpose of DIBH-RT for patients to understand the rationale for treatment and
- Multimedia practice sessions with breath work for patients to improve their self-efficacy for DIBH.
Strengths and limitations
Qualitative interviews were an ideal method to explore participants' experiences and perspectives of their treatment as they provided rich and diverse data difficult to obtain through quantitative means.44 An additional strength was inclusion of participants from two rural departments sampling from larger geographical areas. A limitation of the study was that, due to the rurality of the departments within two local health districts, access to culturally and linguistically diverse populations was limited.
Due to our inability to reach a diverse population, the educational resources created from this study were pitched to non-CALD patients. In an American study, Shukla et al showed language barriers may impact on a physician's decision to offer patients DIBH-RT consequently resulting in poorer treatment outcomes.45
We gleaned valuable insights from participants which generated recommendations to improve patient-focussed care in DIBH-RT. These recommendations suggest care indicators which may positively impact on the patient's ability to undertake breath hold. However, while we can apply these recommendations for some patients, they may not be representative of the general population, particularly CALD patients.
We had a single participant move to free-breathing, due to their inability to achieve or maintain DIBH. Explorations of these patients' experiences are needed to understand why DIBH is not achieved to provide meaningful interventions for them. The use of semi-structured interviews enabled participants to provide nuanced, in-depth information but may have directed participants to topics. As with most qualitative research, our results should not be generalised beyond this group or treatment. Finally, those who volunteered to participate in the study may have had particularly positive or negative DIBH-RT experiences which could have introduced bias.
Conclusion
DIBH-RT can be challenging for patients for myriad reasons. Our results demonstrated the importance of exploring patients' experiences to develop education and recommendations to improve DIBH-RT. Furthermore, the need to meet the informational needs of patients, address performance influencers and recognise the impact of care from ROHPs for DIBH-RT patients and their support network was highlighted. Incorporation of these elements, within a multimodal preparation approach, may improve patient self-efficacy with DIBH-RT, familiarity with planned treatment and focussed care to enhance treatment experiences.
Acknowledgements
Dr Julan Amalaseelan, Matthew Hoffmann, Stephen Manley, Andriana Ford and Kate Odgers-Jewell.
Conflict of Interest
The authors have no conflicts of interest to declare.
Funding
This project was supported by funding from New South Wales (NSW) Health's Rural Research Capacity Building Program. The funder had no role in the design of the study, in the collection, analysis and interpretation of data or in the writing of the manuscript.
Ethical Approval
The study was granted ethical approval by the Northern NSW and the Mid-North Coast Local Health District Research Office's under a non-Human Research Ethics Committee pathway for low-risk projects (approval number: QA396).
Patient Consent Statement
Informed consent was granted by all participants. I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.
Open Research
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author, [KD], upon reasonable request. The data are not publicly available due to their containing information that could compromise the privacy of research participants.
