Title:

Child Proton Beam Therapy: a qualitative study of parental views on treatment and information sources

Abstract

Introduction

Proton Beam Therapy (PBT) is often described as an advanced mode of radiotherapy. Whilst PBT offers an equivalent chance of cure to conventional radiotherapy, it is said to offer a theoretical reduction in long term side effects. NHS patients have had access to PBT since 2008 and approximately 65% of the 1144 approved referrals have been for paediatric cases. Yet, there is little research on how parents in these paediatric cases perceive their child’s PBT and the information sources they encounter.

Methods

This is a qualitative inquiry informed by in-depth interviews carried out with 27 parents of children treated with PBT.

Results

Parents primarily frame PBT as a form of radiation but one which is better than alternatives. Whilst medical professionals do play a role, wider sources of information – such as other families and the internet – are important to both initial decision-making and treatment/recovery experiences.

Conclusion

Parents are faced with the challenge of a ‘fragmented expertise’ which comes with the ‘novelty’ of the radiation therapy, the ‘rare’ nature of the tumours and the remote location of clinical specialists.

Implications for Practice

This article will prove useful for practitioners dealing with parents and care givers of children undergoing proton therapy, and is especially valuable and timely for practitioners based in the newly installed proton centres in the UK. Two high energy proton centres are expected to become fully operational in the UK by the end of 2020. Understanding parents’ experiences and perspectives can help avoid undue anxiety and lead to service improvements and overall satisfaction.

Keywords:

Childhood Cancer; Proton Beam Therapy; Radiotherapy; Parents; Decision-Making

Introduction

Proton Beam Therapy (PBT) is an advanced mode of radiotherapy. Whilst PBT offers an equivalent chance of cure to conventional radiotherapy, it is said to provide possible reductions in long term side effects (1). The high precision nature of PBT increases the effectiveness of therapy and disease control, whilst the comparatively lower dose bath reduces risks of toxicity and damage to healthy tissues (2, 3, 4, 5). It is because of this profile that the role of radiation therapy in paediatric cancer treatments has expanded (6, 7). However, PBT is a complex technology and is still undergoing rapid technical advances, and whilst there is evidence to support the benefits of PBT over conventional therapy, further clinical trials and long-term evidence are encouraged (8, 9, 10).

Since 2008, select NHS patients have had access to PBT via a government funded programme (11, 12), which sends patients to be treated in American or other European centres. Access is restricted to an eligible list of users (see 11 for further information) and as part of the referral process all cases are reviewed by NHS England expert reference panels through a virtual multidisciplinary team process. The British Government continues to invest heavily in PBT, with over £250m dedicated to building two high-energy proton centres in England. The Christie Hospital in Manchester became operational in December 2018, and the second high energy proton facility is planned to open at University College London Hospital, in late 2020. Until the NHS service reaches full capacity, the NHS will continue to fund treatment for some patients abroad (11).

There is a developing body of research exploring the views and experiences of patients treated with PBT (13, 14). This research is largely focused on adult patients’ quality of life and symptom management, and are indicative that PBT may be a favourable treatment. Elsewhere, a small body of research has examined parents’ experiences of their child’s proton treatment (15, 16). Cockle and Ogden (15) looked at parents’ experiences of travelling, from the United Kingdom, to the United States. Whilst parents were initially worried about the need to travel abroad for their child’s treatment, they described the overall experience in America as positive. However, these parents struggled to settle back into their lives in the UK due to the loss of support networks and the intense medical care regime delivered in the USA.

To date, little has been published regarding parental views on PBT and the sources of information they encounter. Previous research has highlighted the important role of parents in the context of their child’s illness trajectory, especially in the context of treatment decision-making. When it comes to treatment decision-making for their child, parents understand it as their role and responsibility to make sure options are explored and open (3, 17). Research has suggested that ‘ill-informed’ notions and uncertainty about treatment can lead to unnecessary anxiety and stress regarding the actual facts of treatment which, in turn, impact behaviours towards it (16, 18, 19). It is important that we understand parental views of PBT, and the information sources they rely on, as since the start of the programme a total of 1144 patients have been approved for proton treatment and of these 743 (65%) have been for paediatric cases (8).

This research aims to explore the way parents of children treated with PBT view both the treatment and the sources of information surrounding the treatment. In doing so, the paper seeks to offer guidance to practitioners working with families at the newly installed proton centres in the UK.

Method Design

This research adopted a qualitative design. The use of a qualitative approach is encouraged in health-related inquiries seeking to investigate health, illness or health services from the perspective of the communities and individuals affected (20). As we return to in the discussion, this study is grounded within a social constructionist perspective. The premise of a social constructionist ontology is that the worlds in which we live in are not just natural objective phenomena, but are ordered and shaped through a range of social interactions and practices (21). In line with this, talk produced within interviews are not regarded as direct representation of the speakers’ experience, but rather a self-reported retrospective account of their experience, shaped by their intervening experiences and the dynamics of the interview encounter (22, 23).

A semi-structured style of interview was adopted. This style of interview permits the researcher to loosely set the agenda in terms of topics covered, whilst allowing the interviewee to respond in a manner that determines the importance and relevance of each topic (20, 24). Participants were invited to take part in a single interview, or a joint interview with their partner. Joint interviews were adopted with the intention of maximising access to and recruitment of fathers (25).

Recruitment and Data Collection

The study received ethical approval from the University of Surrey’s Ethics Committee. Recruitment commenced in late 2015 and lasted for six months. Purposeful sampling was used to recruit participants. Purposeful sampling is suitable for the identification and selection of information-rich participants, within qualitative inquiries (26, 27), and is an accepted method for qualitative inquiries which do not seek to generalise findings (26). Recruitment took place via an online support group and two charities. A recruitment poster was circulated via both platforms and interested volunteers were encouraged to contact the researcher.

Interviews were conducted face-to-face and topics included the run-up to the child’s diagnosis, decision-making regarding treatments, views of PBT, experiences of the proton centres as well as post-treatment experiences. Questions were kept as open as possible with the initial question, for example, asking “starting from the beginning, can you please tell me when you first suspected a problem with your child’s health and what happened from there?”

Two of the single interviews were carried out with fathers.

Participants

Overall, 21 families participated in this research and six joints interviews and 15 single interviews were completed. The majority were funded via the NHS and two families fell into the category of ‘non-NHS’ (Non-NHS refers to families who opted for PBT against the advice of the proton expert decision panel, and privately raised funds for proton treatment). All couples defined themselves as heterosexual. Table 1 provides a breakdown of participants’ characteristics.

Participants’ children had received PBT between 2011-2016. The children’s age ranged from two-years to 16 years, and they had been diagnosed and treated for a range of tumours at either ProCure, Oklahoma, or University of Florida Proton Institute.

As shown in Figure 1, families experienced different referral patterns. Aims, objectives and side effects of treatment were discussed with parents during a consultation meeting with a host of different clinicians, such as; consultant oncologist, consultant radiologist, surgical oncologist, consultant neurologist, and, in one case, endocrinologist. Information pamphlets specific to their child’s tumour, as well as information about PBT was provided during these consultations; although the latter was not provided to everyone. Information was also received from McMillan and CLIC Sargent nurse practitioners, especially information related to the travel element and the treatment centres abroad. Once patients were approved by the panel, they received information packs from the proton treatment centres.

Analysis

Interviews were transcribed verbatim and imported into NVivo 10. The use of software aided the process of coding the data into conceptual themes. Open coding was applied to the first stage of analysis. Transcripts were analysed in detail and themes and patterns were assigned a labelled code. Codes were detailed and numerous, and during the second round of analysis gradually became consolidated into more generalized categories. Transcription and analysis of the interviews commenced whilst data collection was ongoing. This reflexive approach enabled the identification of emerging themes and allowed space for these themes to be developed further during subsequent interviews (28).

Results

Findings highlight the ways in which parents of children treated with Proton Beam Therapy (PBT) view both PBT and the sources of information available to them.

Pseudonyms have been used throughout the presentation of findings.

Views of Proton Beam Therapy

Proton Beam Therapy as ‘radiation’

Parents recalled an initial reluctance towards PBT.

“…initially we (herself and her husband) were quite scared of the word radiotherapy and what it means…”

(Rochelle, NHS parent)

“…I suppose it was a big blow to us to think that our child, who was very young, needing any kind of radiation, it was still a very big mental hurdle to get over having our son, you know, having any radiation to his brain and at such a young age…”

(Linda, NHS parent)

The term ‘radiation’ carried negative connotations for both of these mothers and their apprehension towards radiation therapy initially influenced their views of PBT. Both mothers explained that their concerns had led them to search for and consider alternative treatments. This apprehension towards radiation was also mentioned by Agatha, when asked if she had heard of PBT prior to it being recommended for her son, Jacob. Jacob had been diagnosed and treated for a brain tumour when he was 14 months old; his tumour later returned. During this relapse PBT was recommended in conjunction with a full resection of the tumour. Agatha explained that whilst aware of proton therapy she had never contemplated the use of it in treating Jacob’s tumour, because it is a form of radiation.

“…I knew that there is such a therapy somewhere, I don’t know where, and it’s good for cancers, and particularly for brain tumours, but, that’s it, that’s all I knew, I didn’t know much about it, because in our mind it was radiotherapy, and all the horrible side effects and everything would come after radiotherapy, my dad is a nuclear physicist, he works with electrons, not protons, but within his job he was in contact and communicating with people who were working with real radiation, and he’s seen for himself the side effects and all that stuff and heard stories. And our family friend had side effects and, so, it was a pure horror to know that our child has to go through radiotherapy, because even during all these years, I would be refusing any extra CT scan or any extra X-ray, for the sake of not having any extra radiation, it’s just, within our family it’s a little bit, you know, like too much, and we are too sensitive, especially me, because of my dad, so any sort of radio, contact with radiotherapy and radioactivity seemed to me like a pure nightmare, a disaster...”

(Agatha, NHS parent)

Proton Beam Therapy as a Better Type of Radiation Therapy

Juxtaposing PBT with X-ray therapy was a common approach adopted when parents talked about their understanding and views of treatment. Parents focused on the differences between the two treatments in order to explain why PBT is the better type of therapy. The targeted nature of PBT and consequent reduced side effect profile were regularly used as way of explaining the benefits of treatment; the outcome was very rarely mentioned. Some parents distinguished PBT as a superior mode of treatment and explained that it is a better mode of therapy when compared to ‘normal radiotherapy’ or ‘normal cancer treatment’.

“…so I know that basically conventional X-ray sort of goes into the body, but it comes out in all kind of directions, so it can hit healthy tissues, whereas the proton, basically is a beam that goes in and it can be controlled, it comes out without hitting so much of the healthy tissues. So, it’s very important for children to have that because they’re still growing, if you’re having it in a dodgy place of your body, it can have a bad long-term impact, it helps to minimise that damage…”

(Rochelle, NHS parent)

“…the side effect profile is less intense than standard radiation because it (PBT) purely goes through the length, breadth and depth of the tumour, as opposed to standard radiation that goes in and out and buggers everything real fast…”

(Peggy, NHS parent)

For Hazel, one of the non-NHS parents, the decision to opt for proton treatment for her son came down to the available evidence on PBT’s ability to reduce the side effects of treatment. According to Hazel the high-risk protocol involving X-ray radiation can be extremely debilitating and will leave young brain tumour patients with severe disabilities due to the high dose of radiation exposed to the brain. The ability of PBT to reduce the occurrence of these side effects is what drove her to opt for this treatment. For this parent, the side effect profile of PBT precedes its efficacy to treat the tumour;

“…there was no evidence that proton is better than photon in treating the cancer, and that is still the case, it’s not better in treating cancer but it is the better in the side effects…”

(Hazel, non-NHS funded parent)

Overall, whilst most parents initially had negative conceptions of PBT, due to it being a type of radiation therapy, these negative associations subsided when PBT was juxtaposed with conventional radiotherapy and its features and abilities distinguished. The idea that PBT can treat tumours in a more targeted fashion and limit the occurrence of side effects made the treatment more alluring. The outcome and effects of proton treatment on the tumour were very rarely mentioned. As described by one mother, it was only post treatment that she realised PBT had not actually destroyed and removed the tumour, but stabilised it.

Seeking Information about PBT

Parents said that they relied on various sources of information in order formulate a view of proton treatment and, sometimes, decide whether they think it is suitable for their child.

Reliable Sources

Almost all parents relied on the internet in order to access information about PBT. Most parents explained that they were cautious and took extra measures to ensure that the information they sought and used was reliable. Ross and Katriona, for example, described avoiding sensationalised information and sticking to the reliable sources. Referring to the case of Ashya King, these parents explained that it is important to make sure the information they read about the treatment comes from credible sources. When asked to substantiate this claim and elaborate on what information they used to support their decision for proton, they explained that they relied on information relayed to them by the radiologist and also read up on information online, from sources which they describe as reliable;

“Katriona: we’d be going online trying to find out more information and trying to stick to the website (the NHS website),

Ross: yes, we were not looking at sort of, websites, information on websites that weren’t linked to the NHS or the brain tumour charity or anything like that, because, you know, you’re just scared of seeing sensationalist information that is not really backed up and obviously we knew that those ones (NHS and brain tumour charity websites) would be, so we stuck to those…”

(Katriona and Ross, NHS parents)

Taking a similarly precautionary measure, Jennifer explained that she did not ‘doctor google’ information about PBT and made use of the booklet given to her by the doctors. Despite the plethora of information available online, these parents described themselves as having relied on information produced and/or approved by the healthcare professionals. This draws attention to the important role that patient information material plays in informing users’ views of treatment.

Medical Professionals

Parents actively sought the opinion of clinicians who had first-hand experience and expertise of PBT. Hazel, for example, explains that having met with and sought the approval of a doctor practicing at a proton centre added credence to her decision. In the context of PBT, Hazel appears to differentiate between the type of expertise she views as credible.

“…for me personally, meeting with someone who works with proton every day and who is considered a real expert, who’d already treated children with the same condition, if it had been, if he’d said to me, ‘I’ve never treated anyone with Medulloblastoma, erm, I think I would have been very worried, but he actually gave me a presentation…”

(Hazel, non-NHS funded parent)

Elsewhere, parents explained that although PBT was recommended and approved by the NHS team of clinicians, they looked to the US based proton centre clinicians for advice;

“…I asked them (NHS doctors) to contact America because I wanted them to make the decision, because ultimately they know what they’re doing…”

(Carly, NHS parent)

“…I’d still like him (US based clinician) to be able to say, yes that’s exactly what we would want to see (from the post-treatment scan), because he’s the proton expert and they’re not over here…”

(Claire, NHS parent)

The desire that US based medics be involved in the post-treatment care and follow-up was not uncommon to parents’ accounts, with some parents recalling their frustration at the UK based doctors who were unable to provide in-depth information about PBT and its outcome. Some of the families had made a follow-up trip to the states, and visited the primary treating consultant, whilst others spoke of their plans to make a visit in the near future

Other Families and Patients Treated with PBT

The experiences of other patients and families were considered to be especially important; and parents relied on information from patients diagnosed with the same disease as their child, as well as patients who had undergone PBT. For example, Claire’s daughter, Emily, was diagnosed with a rare tumour. In an effort to better understand the tumour, and its outcome, Claire explains that they contacted someone who was treated for the same type of tumour;

“…Emily has spoken to someone who had the same thing when he was 20, I think 23-24 and he is now 10 years on and he’s well and he had the same surgeon as Emily, but he was treated with the radiotherapy and the chemotherapy, but he’s well, so it’s hopefully, and he doesn’t seem to have any side effects, you know, from the radiation, so hopefully with the proton there’s even less chance of side effects, and my main concern are her eyes, because it’s that area…but they say it’s quite unlikely that she’ll have any of that, so we’ll see, that’s the thing, it’s quite a new treatment, so you don’t know…”

(Claire, NHS parent)

Drawing from the experience of someone with the same rare condition, mother and daughter tried to formulate their expectations of the tumour’s outcome and recovery. However, Emily’s tumour has been treated with proton therapy and since this is a novel treatment Claire explains that they cannot be certain that Emily’s outcome will be similar to the other person, who was treated with conventional radiotherapy.

Another parent, Louise, explains that due to the fact her son’s tumour is rare and likely to return she has attempted to gain as much information as possible. Although her son has responded well to PBT, the lack of research and information in relation to the tumour, and its long-term behaviour towards PBT, is a cause for concern for this mother. Louise explains that there is very little research available on ‘proton and Chordoma’, but in an effort to manage these uncertainties she has joined a Chordoma support group in order to learn about the tumour, from other patients and families. Louise appears to be supplementing gaps in scientific research and expertise, in relation to proton therapy and Chordomas, with the experiential knowledge of other sufferers.

Parents emphasised the need, and importance, of having access to ‘real life-stories’. Whilst referring to difficulties associated with dealing with and managing their child’s diagnosis, these parents spoke about their want for access to real proton patient stories, rather than information sheets and medical reports. Agatha’s son has a rare type of tumour, and whilst she has managed to source some information about this tumour and its response to PBT, she speaks of her frustration at not having access and insight into actual cases concerning paediatric patients and their response to PBT. Agatha suggests that there is only so much she can learn from what she has read on the internet and brochures. For her, the type of textbook expertise that the doctors are offering is different and ‘far away from the reality’ of the lived experiences of the disease and proton treatment.

“…I don’t want to hear statistics, I want real life stories because, you know, statistics is so far away from reality, you are dealing within your family and you want to hear life stories…”

(Agatha, NHS parent)

Discussion

Parents’ initial views of proton therapy were informed by traditional discourse associated with radiation and this led to negative perceptions and uncertainties about its use, with some parents describing instances where they searched for and considered alternative treatment pathways for their child. Previous research has found that misconceptions surrounding radiotherapy are thought to heighten patient anxieties and impact decision-making (16, 18, 19, 29, 30, 31, 32). Parents portrayed themselves as putting these negative associations aside as they developed their understanding of treatment and became aware of the targeted nature of PBT and its consequent ability to reduce treatment side effects; the outcome of treatment was rarely mentioned. A common approach adopted by parents was to juxtapose PBT with X-ray therapy; highlighting the features of PBT and adding to the allure of the technology. Yet, according to the clinical lead for the National Proton Beam Therapy Service a ‘mythology’ has emerged about PBT which suggests that, compared to conventional radiotherapy, PBT is more effective and/or without toxicity (8). Whilst parents appear to be reproducing this myth, by regarding PBT in a more favourable light compared to conventional radiotherapy therapy, they also make note of the treatment’s short falls and absent long-term evidence. More so, throughout their narratives they described themselves as being proactive in sourcing information about PBT, and ensuring the information they sought was credible.

Parents’ discussion of information sources suggests that they are faced with the challenge of a ‘fragmented expertise’ which comes with the ‘rare’ nature of the tumours, the novelty of the treatment and the remote location of clinical specialists. In this research, parents spoke of largely relying on online support groups. The growth in the use of web-based health related information is nothing new, where the majority of healthcare consumers are able to search their conditions and access vast amounts of information (33). In the case of PBT, however, the use of online groups may be due to the fact that proton beam therapy is framed as novel and the use of it in comparison to conventional therapies is limited and sporadic in the UK; therefore, virtual rather than physical support communities have been formed. The same principle may be applied to the rare nature of the tumours, for which PBT is employed to treat. The infrequent post-PBT appointments and limited access to medical professionals, may also have led to the heavy reliance of these parents on support groups and online communities. It is important to be mindful of these issues even when the NHS centres become fully operational, given that referrals from the north of England, Scotland, Northern Ireland and north Wales will be to The Christie for example (34), and therefore the challenges of fragmented expertise may still apply.

Limitations

These findings are based on accounts given by parents during interviews. Based on the social constructionist perspective adopted in this study, talk produced within interviews are not regarded as direct representation of the speakers’ experience, but rather a self-reported retrospective account of their experience (22, 35, 36). As research participants, parents may have conflicting motivations when presenting their accounts; on the one hand, their aim is to provide insight into the private world of childhood cancer and to present a ‘true’ account of the experience. On the other hand, however, parents may also be aiming to present their own identities in face of socially constructed notions of parenthood produced within public, professional and media discourse (22). Whilst not a limitation in itself, it does highlight how research cannot be generalised to all other parents. The current sample was recruited in part through online groups and may as a consequence be more likely to talk about internet and online sources

Despite efforts to recruit fathers to this study, only a limited number of fathers participated. Recruiting fathers is known to be a difficult challenge within paediatric research (37) and a future study needs to be mindful of this. Whilst joint interviews did not help facilitate this within the current study, recent research has suggested that father participation may increase if researchers “target father-focused recruitment venues, clearly communicate the benefits of the research for fathers and their families and adopt streamlined study procedures” and aim to make use of recruitment initiatives which encourage fathers’ participation.

Conclusion & Recommendations

Notwithstanding this discussion of limitations, findings of this study are of value to practitioners involved in the current PBT overseas referral pathway, as well as those working in the UK based proton centres. When fully operational, each NHS centre is anticipated to treat over 750 patients per year, with the majority expected to be children and young patients (38). Practitioners working alongside children and their parents may want to consider the following:

(i) The radiation nature of treatment prefigures notions of PBT, and can lead to undue anxiety and stress.

(ii) Given that PBT has only recently been introduced to the NHS, there is scepticism amongst some parents regarding who the proton experts are. The input and opinion of the US based practitioners are valued and sought. It was suggested, by some parents, that NHS based practitioners were unable to provide detailed information about PBT and its outcome.

(iii) PBT is often used to treat rare tumours. The lack of information about PBT, coupled with the lack of information about PBT and the tumour can be daunting for parents. They supplement this knowledge from access to online blogs and support groups. Parents seek and access a wide plethora of information. The lived experiences of other patients and families are especially valued.

We therefore recommend that parents are provided consultation about PBT by a practitioner able to provide in-depth and adequate information about the treatment whilst, at the same time, linking parents to families who have undergone the PBT experience. Access to cases similar to their own child’s diagnosis is especially valued by parents.

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Table 1: Participants’ Characteristics

Characteristic

Category

n

Gender

Female

19

Male

8

Marital Status

Single

1

Married

16

Divorced

4

Ethnicity

White (British)

16

White (Other)

3

Asian (Indian/Pakistani/Chinese)

2

Child’s PBT Funding Route

NHS

19

Non-NHS

2

Figure 1: Patient Pathways (dashed lines indicate the pathway of relapsed patients)

1