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Journal of Medical Radiation Sciences logoLink to Journal of Medical Radiation Sciences
. 2023 Dec 22;71(1):91–99. doi: 10.1002/jmrs.745

A multi‐centre survey of New Zealand cancer patients' preferences for radiation treatment information

Alannah Flockton 1,2,, Aidan Leong 1,2,3, Daniel Gilfillan 1, Peter Larsen 1,4
PMCID: PMC10920932  PMID: 38131264

Abstract

Introduction

Patients undergoing radiation therapy have a diverse range of information needs, however, there is a lack of data specific to the needs of New Zealand patients. This cross‐sectional survey captured New Zealand cancer patients' preferences for radiation treatment information. Preferences were assessed regarding the scope of information needs and the satisfaction with which these needs were being met.

Methods

A custom survey was offered to 275 eligible patients undergoing radiation treatment at six of 10 departments across New Zealand over a 2‐day period. The survey captured patient demographics as well as information needs and satisfaction across five distinct domains using Likert scales and one free‐text question. Responses were analysed using descriptive statistics and directed content analysis.

Results

Over 80% of participants rated all information domains as extremely or very important. Over 90% of participants were extremely satisfied or very well satisfied in four of the five domains. Information on what happens after radiation treatment had the lowest satisfaction at 78%. No demographic subcategories were clearly associated with differences in information needs or satisfaction. 59% of participants indicated their willingness to engage in online education. The qualitative analysis strongly corroborated the quantitative results.

Conclusion

The New Zealand cancer patients surveyed in this study demonstrated high levels of importance and satisfaction with the information provided during radiation treatment. Information on what happens after completing radiation treatment had the lowest satisfaction. These findings support further exploration of New Zealand cancer patients' information needs following radiation treatment as well as strategies to address them.

Keywords: Cancer patients' preferences, information needs, mixed methods, radiation treatment


A multi‐centre survey capturing New Zealand cancer patients’ preferences for radiation treatment information. High levels of information importance and satisfaction was demonstrated. Information on what happens after completing radiation treatment had the lowest satisfaction.

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Introduction

The information needs of radiation therapy patients are diverse and known to change over the course of treatment. 1 , 2 , 3 , 4 Relevant and timely information delivery is key to maximising patient outcomes, with evidence suggesting patients' well‐being can be negatively affected when information needs are not prioritised. 5 Patients' misconceptions regarding radiation technology and lack of understanding regarding the treatment process can lead them to feel a lack of control around their treatment. 6 Furthermore, providing continuous and comprehensive information throughout the entire radiation treatment journey has shown to help reduce fears regarding treatment and improve patient wellbeing. 2

Patient information needs have also been shown to vary across different demographics such as age, education level and gender. 1 , 4 , 7 Health information needs can also vary based on sociocultural and economic factors such as race/ethnicity, and household income. 8 , 9 Being aware of personal factors and the implication, they can have on treatment information preference is important for providing individualised, patient‐centred care. 7 Patient information needs are likely to change during their treatment pathway. 4 While information needs may decrease as patients progress through radiation treatment, several studies highlight these needs can remain high. 2 , 10 It is therefore important to frequently assess patients' information needs throughout their care and provide personally tailored information appropriate for each stage of treatment.

The COVID‐19 pandemic saw health education rapidly orientate towards the online delivery of information and patient care. In New Zealand, telehealth use increased to 80% at the height of the pandemic across all cancer specialities. 11 Telehealth provides a convenient way for patients to connect with health professionals remotely, but the experience can be impersonal and time consuming for some. 12 In this post COVID‐19 era, it is important to investigate patients' willingness to continue to engage with online education resources.

While this topic has been studied globally, there is a lack of studies specific to the information needs of radiation therapy patients living in New Zealand. Understanding the importance New Zealand patients place on the information, they receive regarding radiation treatment, and their level of satisfaction with the information provided is key to ensuring patients receive the best standard of care. A multi‐centre evaluation of New Zealand patient information needs would also provide researchers and clinical departments with valuable data against which current patient education practices can be evaluated, as well as inform future initiatives.

The aim of this study was to survey a cross‐section of New Zealand cancer patients regarding their preferences for radiation treatment information. Specific preferences were assessed regarding the scope of radiation treatment information needs, and the satisfaction with which these needs were being met.

Methods

This study was a cross‐sectional, multi‐centre survey investigating patient preferences for radiation treatment information in New Zealand. All 10 public and private radiation departments across New Zealand were invited to participate. Every eligible patient attending the radiation departments at the time of data collection were invited to complete the survey. Patients were eligible if they were undergoing external beam radiation treatment and were 18 years or older. Patients were excluded if they were: undergoing brachytherapy or superficial X‐ray/orthovoltage treatment only; unable to confirm assent to the participant information sheet due to diminished understanding; or were physically unable to complete the survey due to impairment.

Survey administration was coordinated across all participating departments within a specified 2‐day period during November 2022 to capture a nation‐wide snapshot of the New Zealand patient population. Day one was to offer the survey to all eligible patients, and day two was to catch those who may have been missed inadvertently on day one. A radiation therapist from each centre facilitated patient screening and administration of the surveys.

A custom, paper‐based survey was developed to meet the needs of this broad cross‐sectional study. It was designed to be completed in less than 5 min to maximise participation and reduce the impact on clinical workflow. Participants were informed that submitting the survey confirmed consent. It was emphasised that participation was entirely voluntary, anonymous and patients may choose not to complete or submit the survey without giving a reason and their care would not be compromised.

The survey consisted of 20 Likert‐scale questions and one free‐text question (see Appendix S1). Nine Likert‐scale questions related to patient demographics as well as the characteristics of their treatment. The remaining questions asked participants to rate five information domains in terms of importance and how well their information needs relating to these domains had been met at the time of the survey. These five information domains consisted of: Logistics – such as Where to park and appointment times; What will I see, hear and feel during radiation treatment; How radiation treatment is delivered accurately and safely to my body; What side effects I may experience from radiation treatment; What happens after radiation treatment is finished. Participants also rated their willingness to participate in an online education session about radiation treatment if available. A single free‐text question asked participants to reflect on the information received so far and identify one thing they wish they had known before starting radiation treatment.

Survey data were entered, and descriptive statistics generated using Microsoft Excel. Statistical analysis was performed using SPSS Statistics (IBM, Armonk, NY, USA). Likert‐scale responses were grouped into binary outcomes (extremely/very vs. somewhat/not so/not at all), and Pearson Chi‐Square tests used to test for significance in differences based on demographic subgroups. A P value of less than 0.05 was considered statistically significant.

Free text comments were analysed using directed content analysis. Comments underwent preliminary coding using the five initial information domains from the survey as predetermined codes, plus an “other” code for any emerging categories. 13 Further rounds of secondary and tertiary coding established subcategories which were collated into generic categories before the generation of the final main categories. 14 Each comment and assigned code were organised systematically in Microsoft Excel to ensure a clear audit trail, and anchor statements that exemplified the main categories were identified for reporting the results. 15 , 16 To ensure rigour and trustworthiness of the process, two researchers performed the coding independently and then discussed their interpretations and findings until an agreement was reached.

This study was approved by the University of Otago Human Research Ethics Committee (reference number H22/098). Locality authorisation was gained from all participating clinical departments before survey administration.

Results

Participation

Six of 10 radiation departments across New Zealand elected to participate. There was an even mixture of public and private departments spread across both the North and South Islands. Patient recruitment is shown in Figure 1. Three hundred patients were screened for eligibility with 25 excluded as per the exclusion criteria. Of the remaining 275 patients, 253 completed surveys were returned. The response rate across participating centres ranged from 74% to 100%, with a combined cumulative response rate of 92%.

Figure 1.

Figure 1

Patient recruitment.

Demographics

Table 1 shows the demographics of the participants. Of those who specified their age, 51% were between 51 and 70 with approximately two‐thirds (62%) identifying themselves as male. 80% of participants were undergoing their first course of radiation therapy. Pelvis was the most common treatment site identified at 33%. English was a first language for 95% of the surveyed participants and 84% identified as New Zealand European. There was a relatively even distribution of participants across treatment fractionation and current point in treatment schedule. Nearly, 65% of participants reported they were living at home while undergoing treatment.

Table 1.

Sample demographics.

Category Response Frequency (%)
Age 18–30 5 (2.0%)
31–50 25 (9.9%)
51–70 128 (50.6%)
>70 95 (37.5%)
Gender a Female 88 (37.6%)
Male 146 (62.4%)
Non‐binary/other gender 0 (0.0%)
Prefer not to say 0 (0.0%)
English as first language a Yes 227 (94.6%)
No 13 (5.4%)
Ethnicity b New Zealand European 222 (83.8%)
Māori 18 (6.8%)
Samoan 8 (3.0%)
Chinese 0 (0.0%)
Cook Island Māori 0 (0.0%)
Indian 0 (0.0%)
Niuean 0 (0.0%)
Tongan 0 (0.0%)
Other 17 (6.4%)
Treatment site a Head 40 (15.9%)
Mouth/throat 31 (12.4%)
Breast 37 (14.7%)
Chest 21 (8.4%)
Abdomen 17 (6.8%)
Pelvis 84 (33.5%)
Limb 7 (2.8%)
Multiple sites 7 (2.8%)
Other 7 (2.8%)
First course of RT a Yes 172 (79.6%)
No 44 (20.4%)
Total number of treatments a 1–10 45 (17.9%)
11–20 93 (36.9%)
21–30 89 (35.3%)
>30 25 (9.9%)
Current point in treatment a First treatment 17 (6.8%)
Near start of treatment 50 (19.9%)
Near middle of treatment 74 (29.5%)
Near end of treatment 83 (33.1%)
Last treatment 27 (10.8%)
Living situation a Home 163 (64.9%)
Accommodation 85 (33.9%)
Hospital 3 (1.2%)
a

Total number of responses excludes those who did not select an option from survey choices.

b

Ethnicity total exceeds sample size to include respondents who identified dual ethnicities.

Rating of information importance

When asked to rate the importance of the five information domains relating to radiation treatment, more than 80% of participants rated receiving information for each domain as extremely or very important. Figure 2 shows the distribution of responses across each domain. The two most highly rated domains of information importance were ‘what side effects I may experience from radiation treatment’ and ‘what happens after radiation treatment’ with 89.6% of responses selecting extremely or very important. Participants rated information regarding their experience of ‘what I will see, hear or feel during radiation treatment’ as the least important with 9.2% selecting not so much or not at all.

Figure 2.

Figure 2

Participant rating of information importance at the start of radiation therapy (%).

Differences in importance response distribution across all five domains within each of the nine demographic categories listed in Table 1 were tested using Pearson Chi‐Square tests. Logistics were considered a greater concern for participants over 70, and for those having more total treatments. Accuracy and safety was a greater concern for those on their first course of radiation treatment. On review, the limited number of not at all, not so much, and somewhat responses (pooled for comparison to very and extremely responses) commonly resulted in cross‐tabulations with fewer than 10 responses which were responsible for observable variations in trends across demographic subcategories. For this reason, the interpretation of statistical testing was considered unreliable, and the analysis was not explored further.

Rating of information satisfaction

Figure 3 shows participants' level of satisfaction with the provided information at their current point of treatment across the five information domains. Information satisfaction was greater than 90% with participants selecting extremely or very satisfied across four of the five domains. However, the ‘what happens after radiation treatment’ domain had the lowest satisfaction at 78%. The rating of extremely or very satisfied in this domain was more than 20% lower than the mean of the other information domains.

Figure 3.

Figure 3

Participant rating of information satisfaction at current point of treatment (%).

Differences in satisfaction response distribution were similarly tested as for importance response distribution. Participants with fewer than 10 treatments were slightly less satisfied with information about ‘logistics’, and satisfaction in the ‘see, hear and feel’ domain was higher in European participants than other ethnicities. As for results relating to information importance, cross‐tabulations consistently featured frequencies of less than 10 responses so further analysis was not explored.

Willingness to participate in online education

Participants in the study were asked to rate the likelihood of their engagement in an online education session about radiation treatment. Nearly 60% of participants indicated they would likely participate in an online session if available (Fig. 4). Analysis of responses against demographics showed the distribution of responses were seen to be broadly similar across all age groups.

Figure 4.

Figure 4

Participant willingness to participate in an online education session? (%).

Qualitative analysis

The final question in the survey asked participants ‘What is one thing you know now that you wished you knew before starting radiation treatment?’. Of the 253 submitted surveys, 139 responses were excluded due to null response such as leaving it blank, writing “not applicable” or the comment was illegible. Five final main categories were identified and are presented in Table 2.

Table 2.

Main categories.

Clear explanations and well informed
Communication – Patient‐specific needs
The ease of the treatment process
The severity of side effects had a greater impact than expected
Uncertainty regarding future management and treatment results

Clear explanations and well informed

Most participants commented positively on the way their information needs had been met and many felt nothing had been missed or not addressed by the radiation team. Several participants used this comment section to express their appreciation towards radiation team, stating the information was clearly explained and they felt well informed with all their questions answered.

Nothing I can think of, everything was explained well. (P 225)

I was kept well informed every step of the way. I couldn't ask for better information or care. (P 306)

All my questions have been answered prior to commencement of treatment. (P 410)

Communication – Patient‐specific needs

Many comments highlighted how the information needs of patients were often specific to their own situation. A very diverse range of patient‐specific needs were expressed such as bladder/bowel preparation, cultural responsiveness and preference for information format.

That there could be delays, no full bladder, faecal matter, extending time for treatment. (P 126)

I wish I knew about Whaiora support for Māori people. (P 551)

Wish we had received more paperwork on treatment. A lot was verbal and no written handouts. (P 329)

The ease of the treatment process

A similar number of participants acknowledged their concern about the radiation process prior to starting treatment, but highlighted it was far easier, less painful and not as intimidating as they were expecting. Others commented on the efficiency of the radiation treatment process.

It's not as scary as I thought it would be. (P 542)

That it does not hurt. (P 234)

How seamless the treatments have been. (P 316)

The severity of side effects had a greater impact than expected

Some participants commented that while they were aware there would be side effects from radiation treatment, the level of impact was greater than anticipated. Over half of the comments relating to this category came from participants receiving treatment to their mouth/throat region.

After 3 treatments I'm amazed at the level of tiredness after the last dose. (P 107)

How much of my hair would fall out. My hair loss is more than half my head. (P 220)

That I wasn't realistic about the sudden decline in normality after 3 weeks due to the mucus build up and the subsequent decline in physical willingness ‐ the drive to be active had to be forced. (P 614)

Uncertainty regarding future management and treatment results

Comments regarding uncertainty of the management of participants' illness beyond the completion of treatment were also frequently observed. These related to the treatment follow up process and timing of treatment results.

What is the ongoing plan after radiation finishes and do I see the oncologist and when. (P 317)

How long it would be until I get the results of my treatment. (P 637)

The complete process and what happens when treatment is complete. (P 634)

Discussion

The findings suggest patients who completed this survey are having their information needs met as high levels of information importance and satisfaction across all domain were reported. A very high response rate of 92% was achieved across six out of 10 radiation departments across New Zealand; therefore, results can be considered representative of patient perspectives in the participating centres. To the authors' knowledge, this is the first published study of its kind specific to New Zealand patients undergoing radiation treatment.

This study provides specific insight into New Zealand cancer patients' preference for radiation treatment information. Over 80% of participants rated each information domain as extremely or very important and over 90% of participants rating their satisfaction as extremely satisfied or very well satisfied in four of the five domains surveyed. The qualitative analysis strongly corroborated these quantitative results, with many participant comments reaffirming their satisfaction by receiving clear explanations, feeling well informed about their radiation treatment, and noting the ease of treatment. Participants who omitted to write a response or simply put ‘not applicable’ in this comment section may also suggest satisfaction with the information received. Other themes highlighted the desire for clear communication addressing patient‐specific needs such as preparation requirements for radiation, cultural responsiveness and the impact treatment side effects would have on their quality of life. These themes reveal that while the treatment information provided was generally effective, taking the time to assess individual needs and address patient‐specific questions throughout treatment is paramount in providing personalised, patient‐centred care.

There was a noticeable reduction in satisfaction (78%) for the information domain ‘what happens after radiation treatment is finished’. A similar designed study conducted in Canada also reported the lowest patient satisfaction rating (40% of participants) on information on what happens after radiation treatment. 7 Another United Kingdom study highlighted end of treatment information as an area in need of improvement, with participants observing there was not a comparable end of treatment education appointment like there is for pre‐treatment education, and more could be done to formalise this process. 5 In New Zealand, there is no data on when post radiation treatment information is provided to patients. Interestingly, the participants in this study rated the importance and reduced satisfaction of information on what happens after radiation treatment at varying time points across their treatment journey, that is, not only when nearing the end of their radiation treatment when it may be assumed this type of information is becoming most relevant. This difference in perceptions was highlighted by Bolderston 17 who asked both patients and radiation therapists to rate the degree of importance of 15 informational items. For ‘what happens after radiation’ category, radiation therapists ranked it as ninth, whereas patients ranked it as joint second demonstrating radiation therapists may not appreciate how important this type of information is to patients. 17 This study attributed this to issues around survivorship including psychosocial informational needs. Our qualitative analysis suggests the participants felt uncertainty about the success of their radiation treatment and what the follow‐up process would involve. Ongoing work in this area is indicated to explore and address the information needs of New Zealand cancer patients following radiation treatment.

An evaluation of patient information preferences is particularly timely in the context of COVID‐19 with increased utilisation of remote platforms for engagement within healthcare. For this reason, the survey included one specific question asking participants to rate their willingness to participate in an online education session about radiation treatment if available. Only 59% selected definitely yes or probably yes and this was similar across all age groups. In New Zealand, a significant proportion of patients live outside urban centres that offer specialised cancer services and are required to travel for treatment. Therefore, utilising digital technology to facilitate remote education and engagement can be an attractive option. Studies from Australia 18 and Canada 7 , 19 have explored the online delivery of radiation treatment information and reported both successes and limitations in patient engagement. Access to technology, digital literacy and patient preference are key considerations for each local context when an online resource is being considered either in place of, or in addition to, an in‐person interaction. 20 Failure to take into account such ‘digital determinants of health’ may inadvertently increase health disparities rather than reducing inequity between diverse patient populations on the basis of geographic location, race/ethnicity, English literacy or household income. 21 For these reasons, the design and implementation of digital education resources need to be well considered, culturally appropriate and providers need to ensure there is equitable access to improve outcomes for all New Zealand patients.

Demographic data was collected in this survey to identify trends in patient information preferences based on demographic and treatment‐related characteristics. Previous studies have reported age, gender and education level can influence patient preferences for information importance, delivery mode and timing of radiation education. 2 , 7 In our study, consistently high ratings of both importance and satisfaction across all information domains resulted in a very limited number of low ratings that could be evaluated for correlation with trends in demographic data. This reduced the reliability with which statistical testing could be interpreted, particularly for demographic subcategories with a limited number of overall respondents such as ethnic minorities and younger patients. While the overall high ratings within the study sample are a key outcome, it is also relevant to note that the perspectives of minority groups are not well captured by quantitatively based survey tools written in English. This warrants further investigation in a more targeted study that fosters direct engagement and co‐design with ethnic minorities to better understand their information needs. While the scope of the survey was limited, this design was intentional to minimise the impact on clinical workflows as well as promote high participation.

Conclusion

The New Zealand cancer patients surveyed in this study demonstrated high levels of importance and satisfaction with the information provided during radiation treatment. This was corroborated by the qualitative findings which highlighted most patients had received clear explanations and felt well informed. A decrease in patient satisfaction on information regarding what happens after radiation treatment was observed and there was variable interest in participating in online education sessions. Further studies are indicated to explore New Zealand‐specific patient information needs following radiation treatment. More broadly, understanding the digital determinants of health and possible barriers to online engagement may help improve the education experience for all radiation patients living in New Zealand.

Conflict of Interests

The authors declare no conflicts of interest.

Funding Information

No external funding was sought or received for this study. Koha chocolates placed beside the survey submission boxes were generously donated by Whittaker's.

Ethics Statement

This study was approved by the University of Otago Human Research Ethics Committee (reference number H22/098). Locality authorisation was gained from all participating clinical departments before survey administration.

Patient Consent Statement

Participants were informed that submitting the survey confirmed consent. It was emphasised that participation was entirely voluntary, anonymous and patients may choose not to complete or submit the survey without giving a reason and their care would not be compromise.

Supporting information

Appendix S1

JMRS-71-91-s001.pdf (163.6KB, pdf)

Acknowledgements

We would like to acknowledge all the New Zealand radiation therapy departments who participated in this study. The radiation therapists who facilitated the survey distribution and achieved such an excellent response rate and the patients who took the time to complete the survey and share their views with us.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data is not publicly available due to privacy or ethical restrictions.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Appendix S1

JMRS-71-91-s001.pdf (163.6KB, pdf)

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data is not publicly available due to privacy or ethical restrictions.


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