HEALTH POLICY CSIRO PUBLISHING

Australian Health Review, 2016, 40, 11–18 http://dx.doi.org/10.1071/AH14262

What is access to radiation therapy? A conceptual framework and review of influencing factors Puma Sundaresan1,4 BSc (Hons), MBBS, FRANZCR, Dean’s Fellow and Clinical Lecturer Martin R. Stockler1,2 MBBS, MSc, FRACP, Professor of Oncology and Clinical Epidemiology Christopher G. Milross1,3 MBBS, MD, FRANZCR, FRACMA, Head of Radiation Oncology 1

The Sydney Medical School, The University of Sydney, Sydney, NSW 2006, Australia. Email: [email protected] 2 Clinical Trials Centre, NHMRC, Level 6, Chris O’Brien Life House, Camperdown, NSW 2050, Australia. 3 Department of Radiation Oncology, Chris O’Brien Life House, Camperdown, NSW 2050, Australia. Email: [email protected] 4 Corresponding author. Email: [email protected]

Abstract Objectives. Optimal radiation therapy (RT) utilisation rates (RURs) have been defined for various cancer indications through extensive work in Australia and overseas. These benchmarks remain unrealised. The gap between optimal RUR and actual RUR has been attributed to inadequacies in ‘RT access’. We aimed to develop a conceptual framework for the consideration of ‘RT access’ by examining the literature for existing constructs and translating it to the context of RT services. We further aimed to use this framework to identify and examine factors influencing ‘RT access’. Methods. Existing models of health care access were reviewed and used to develop a multi-dimensional conceptual framework for ‘RT access’. A review of the literature was then conducted to identify factors reported to affect RT access and utilisation. The electronic databases searched, the host platform and date range of the databases searched were Ovid MEDLINE, 1946 to October 2014 and PsycINFO via OvidSP,1806 to October 2014. Results. The framework developed demonstrates that ‘RT access’ encompasses opportunity for RT as well as the translation of this opportunity to RT utilisation. Opportunity for RT includes availability, affordability, adequacy (quality) and acceptability of RT services. Several factors at the consumer, referrer and RT service levels affect the translation of this opportunity for RT to actual RT utilisation. Conclusion. ‘Access’ is a term that is widely used in the context of health service related research, planning and political discussions. It is a multi-faceted concept with many descriptions. We propose a conceptual framework for the consideration of ‘RT access’ so that factors affecting RT access and utilisation may be identified and examined. Understanding these factors, and quantifying them where possible, will allow objective evaluation of their impact on RT utilisation and guide implementation of strategies to modify their effects. What is known about the topic? It is well documented that the use of RT in Australia is well below evidence-based benchmarks. The shortfall in the use of RT has been attributed to problems with access to treatment services. Although considerable attention has been directed (rightly) towards addressing infrastructure needs, access to RT is more than just supply of services. There is currently no specific framework for RT access to comprehensively consider and examine other factors influencing the use of RT. The existing international literature addresses some of the influencing factors. However, there is a need for a detailed review of all actual and potential influencers of RT utilisation. What does this paper add? This paper presents a conceptual framework for the specific consideration of access to RT. A detailed review of various factors affecting access and utilisation of RT has been performed using the aforementioned conceptual framework. To our knowledge this is the first such review and hence we are confident that it adds to the existing international literature on this subject. What are the implications for practitioners? The topic of improving consumers’ access to RT is of relevance locally, in Australia, as well as internationally. We feel that the RT access framework proposed herein will be of interest and use to those involved in health services research, delivery and policy, especially those involved with the planning and delivering of cancer services. In addition to compiling evidence on the subject, the review of factors influencing RT utilisation highlights and proposes areas for future translational and implementation research in the areas of health services and treatment-related decision making.

Journal compilation  AHHA 2016

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Received 30 December 2014, accepted 22 April 2015, published online 15 June 2015

Introduction Extensive work has been directed towards defining optimal radiation therapy (RT) utilisation rates (RURs) in the management of cancer patients.1–15 Optimal RURs are evidence-based benchmarks for the uptake of RT for various clinical indications. Such benchmarks remain unrealised both in Australia and overseas.16–21 The gap between optimal and actual RUR has been attributed to inadequacies in RT access. At a population level, it is accepted that for cancer patients to obtain optimal outcomes (cure, organ preservation and quality of life), those who may benefit from RT must have ‘access’ to it. ‘Access’ is a term that is widely used in the context of health service-related research, planning and political discussions. It is a multifaceted concept with many descriptions.22–24 The radiation oncology community has long felt that there are multiple factors (both infrastructure related and other) affecting actual RT utilisation, and this has become increasingly recognised in the wider community.25–30 The aim of the present study was to formulate a conceptual framework for the consideration of RT access by examining the literature for existing constructs and translating it to the context of RT services. We used this framework to identify and examine known and potential factors influencing RT access.

to serve and actively empower the consumer to use the services available. Furthermore, there is recognition of ‘candidacy’, which describes the process by which a patient’s suitability for treatment is jointly negotiated between the individual, the health service and health professionals.38 The concepts described above from access models were used to formulate a multidimensional, conceptual framework for RT access, shown in Fig. 1. A review of the literature was conducted to identify factors reported to affect RT utilisation. The electronic databases searched, the host platform and date range of the databases searched were Ovid MEDLINE (1946–October 2014) and PsycINFO via OvidSP (1806–October 2014). Search terms used were ‘radiotherapy’ or ‘radiation therapy’, and either ‘utilisation’, ‘utilization’ or ‘uptake’, or ‘barrier*’, or ‘access’. Review of the articles generated was restricted to those in English. Articles discussing factors affecting (actual or potential) RT utilisation were reviewed in detail and grouped within the conceptual framework shown in Fig. 1. Results and Discussion Issues impacting on opportunity for RT Availability

Methods Defining RT access Early descriptions of access recognised that access to a health service is more than simply the presence of a facility.31 Thus, models of access focused on service availability as well as the extent to which that service may be used as key dimensions. Service utilisation was felt to be influenced by factors such as the affordability and acceptability of the service to the consumer.32 It was also observed that patients’ perceptions and practitioners’ evaluations of need may differ and that organisational factors and customer satisfaction may affect access.22 Thus, concepts of access evolved to incorporate consumer preference in decision making as additional dimensions.33–35 Thus, Penchansky and Thomas described access as a multidimensional construct expressing the fit between the consumer and the health system.23 Recognition of the interaction between service supply and demand for care from consumers prompted definition of optimal access as the provision of the right service ‘at the right time in the right place’.36 Expanding on that, the concept of equity in access was introduced by Mooney, who stated that ‘equality of access is about equal opportunity’.24 Gulliford et al. discussed these concepts and proposed four key aspects to access: availability (opportunity to obtain health care), service utilisation, effectiveness of the service and equity.32 In recent years there has been further refinement to access models in recognition of consumers’ autonomy in making treatment choices and an emerging focus on consumer empowerment.34,37 This implies that efforts to improve access need to ensure that the service is acceptable to the population that it seeks

Service availability pertains to presence of health service infrastructure (facility, equipment and staff) required for the delivery of RT services.39 Globally, availability of RT is inadequate, particularly in low- and middle-income countries, where two-thirds of all cancer deaths occur.25,40 A recent Australian study demonstrated lower RUR in rural Victoria, where there were no local RT services, compared with RUR at an urban location with local RT.41 This finding is consistent with other studies that have demonstrated a decrease in RUR with increasing distance from home to the nearest RT centre and an improvement in RUR with efforts to increase local availability of RT services.42–52 Adequacy Unlike assessing availability, establishing the adequacy of a service is challenging. Modern technologies for the delivery of RT have the potential to deliver specialised, image-guided treatments with resulting improvements in treatment outcomes (disease outcomes or side effects). However, even in developed countries, there is inequity in availability of modern technologies across various geographical locations and practice types. Furthermore, the quality of RT offered, and hence the outcomes obtained, at a service may be influenced by quality assurance procedures in place at that centre and the case load of patients treated there.53 It is recognised that although safety parameters and guidelines for treatment delivery can be defined, it is difficult to define broader benchmarks for adequacy of a service. Thus, it is challenging to assess the potential impact of service adequacy on RT utilisation.

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Equity

Available

Opportunity for RT

Affordable

Adequate

Acceptable

Candidacy

Service level factors

Consumer level factors

Referrer level factors

RT Utilisation Fig. 1. Conceptual framework for consideration of radiotherapy (RT) access.

Affordability There are several financial considerations for patients making decisions regarding RT. These are summarised in the framework adapted from Yabroff et al.54 (Fig. 2). In Australia, some RT facilities (typically those in public hospitals) accept the rebatable fee component of the Medicare Benefit Schedule (MBS). Patients are bulk billed and do not pay upfront or additional fees for RT services. Patients treated at a facility charging the full MBS fee (i.e. a non-bulk billing service) typically make an upfront full payment to the service provider and subsequently apply for reimbursement of the rebatable component from Medicare. These patients face two challenges: the upfront payment and the out-of-pocket ‘gap’ cost. Patients treated at private facilities charging fees above the MBS fee face larger upfront payments and potentially larger gap payments. Although the government-funded Extended Medicare Safety Net scheme limits the extent of financial burden by shouldering some costs above a safety net,55 the need for upfront payment and gap costs may pose significant concerns for patients. Some geographical regions of Australia are solely serviced by the private sector and patients in these regions may face difficult decisions regarding whether or not to have RT. Financial pressure may also arise from other costs, such as transport, accommodation (where relocation is necessary), cost

of care arrangements for dependants, work productivity and time costs. Families where carers require time off work to travel with the patient for physical and psychological support face additional losses to family incomes. A study assessing needs of cancer patients from rural and regional Queensland reported that ‘financial impact’ and ‘concerns about financial future’ were raised as issues for patients and carers from rural Queensland.56 The Patients’ Travel and Accommodation Assistance Scheme (IPTAAS) in NSW provides financial assistance to people who need to travel to obtain specialist medical treatments such as RT. Patients usually do not qualify for this financial assistance if they live within 200 km of a treatment centre. Furthermore, the scheme is not flexible to accommodate the needs of individual patients (e.g. travel for dependent children of sole parents is not funded) and the level of financial support is often insufficient to cover the costs.56 Socioeconomic deprivation has been associated with lower rates of cancer treatments, including RT.57–59 It is plausible that consumers weigh up the financial outlay against the expected disease outcome benefit from RT. The level to which financial concerns alone (as opposed to education levels, treatment-seeking behaviour and other factors) affect decisions to have or not have RT can be difficult to measure. Nevertheless, efforts have been directed towards examining the effect of financial hardship

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Cost associated with RT Direct costs

Medical cost: cost of RT

Non-medical costs (e.g. transport, accomodation)

Time costs

Indirect costs

Loss of work productivity

Loss of work/financial opportunity Cost of outsourcing usual responsibilities (e.g. child care, work) Cost to accompanying family/carers

Fig. 2. Economic burden of cancer: adapted here for consideration of radiotherapy (RT) services (initial model proposed by Yabroff et al.54).

on RUR in socioeconomically disadvantaged populations. A recent American study showed that, in a disadvantaged, urban population, an intervention to eliminate cost of transport to RT improved compliance with RT, suggesting that regardless of other factors, interventions to reduce financial concern increase RUR.60 Acceptability Engagement with the population that a service seeks to serve is important for that service to provide care that is acceptable to its population. This includes consideration of cultural sensitivities and needs of minority or vulnerable groups. In Australia, it has been noted that Indigenous patients are less likely to receive RT compared with non-Indigenous patients.61 Overlapping features, such as local availability and affordability, together with factors at the service, consumer and referrer levels, can certainly affect the opportunity for RT and realisation of this opportunity. Thus, engagement with the local population during service planning, adopting culturally sensitive practices and clinical pathways, and implementing appropriate support services are important. Data from the Northern Territory demonstrate that Indigenous patients have the same levels of compliance with RT as their nonIndigenous counterparts when a culturally sensitive model of care is offered.62 Issues affecting realisation of opportunity to use RT Consumer (patients or carers)-level factors Transport to RT facility. RT typically consists of daily outpatient treatments given over weeks. It is likely that the practicalities of transport concern patients and their carers during RT-related decision making. In their qualitative study of patients and health professionals in rural and regional locations in New South Wales, Grimison et al. found that the needs of patients who lived a distance away from treatment centres were not being met.63 They noted that need for travel and relocation appear to be ongoing factors affecting the uptake of cancer treatments. Other studies have demonstrated that difficulty with transport (actual or perceived) affects the uptake of cancer treatments.64 Patients from non-metropolitan areas have been shown to choose treatment options that do not require RT (e.g. mastectomy by

a local surgeon in preference to relocation for breast-conserving surgery and RT) or accept long delays to starting treatment than travelling long distances or relocating.65,66 Unmet psychosocial needs. Cancer patients experience high levels of unmet need, especially in the psychological domain.56,67–69 Psychological distress and need for specific assistance is heightened for those from rural and remote locations facing long commute times and temporary relocation for RT.70 In addition to psychological distress from diagnosis and need for treatment, separation from family and support networks, forced changes to family roles, disruption to work and family routines and difficulties with living arrangements have been demonstrated to be concerns for rural patients.56 It is possible that patients with high levels of unmet psychosocial needs opt not to have treatment. These individuals may not even get to the point of initial assessment by a radiation oncologist (RO). Consumers’ medical comorbid status. Studies have reported lower rates of RT with increasing comorbidity.50,71 In a study from Montreal, 15% of older newly diagnosed cancer patients refused treatment.72 Although that particular study did not specifically address RT, this finding provides an insight into the concepts of treatment choice and candidacy. Other potential consumer-level factors requiring future attention Consumer knowledge, perceptions and information needs. Consumers’ knowledge, understanding and perceptions of RT may influence their decisions regarding RT. There may be variations in the degree to which consumers have access to accurate information on modern RT technologies, disease outcome benefits, side effects and expected impact on quality of life. There is little insight into consumers’ pre-existing perceptions of RT, their RT-related information needs and their information-seeking behaviours, particularly in the Australian context. Examination of these potential barriers to RT utilisation warrants attention. Consumer perceptions of RT-related inconvenience. Patients’ perceptions of the time and effort expended (inconvenience) in receiving RT may affect treatment decisions. Given the need for daily treatment over many weeks, attendance for RT can be inconvenient. In addition to influencing patients’

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treatment choices, inconvenience associated with RT may affect patients’ feeling of well being and quality of life. This, in turn, may affect decisions regarding re-treatment, which is particularly relevant to palliative patients who may benefit from repeated courses of RT (localised to different sites of symptomatic disease). The likely effect of perceived inconvenience on treatment decisions, although recognised, is poorly understood. There are no reports in the existing literature of efforts to quantify perceived RT inconvenience or examine its affect on treatment decisions. Referrer level factors Referring doctors are often seen as ‘gatekeepers’. Patients who may benefit from RT depend on their primary care physicians or other specialists to refer them for an RT opinion. There may be factors at the level of the referring clinician that act as barriers to referral. This may be particularly relevant in the setting of the referrer gatekeeper who performs a competing treatment to RT even though there may not be evidence to support their modality’s superiority or, indeed, equivalence to RT. This issue of referrer bias requires attention in future studies. Referrer’s knowledge of RT. The level and currency of knowledge regarding RT, its benefits and toxicities may influence the referral practices of doctors. This may occur at both primary care and specialist levels. In an Australian study that used hypothetical clinical scenarios to assess general practitioners’ management decisions in scenarios where RT was indicated for symptom control, there were deficiencies in the advice given to patients regarding RT and referrals made for RT consultations.73 In a study assessing knowledge of primary care referrers in Ontario, at least one-third of primary care referrers were not aware of the benefits of palliative RT in common clinical scenarios.74 That study also found that one-third of primary care physicians felt that patients should have a life expectancy of more than 4 months to warrant referral for palliative RT. Another Canadian study demonstrated that there were perceived and actual deficits in the knowledge of primary care physicians in Alberta on the efficacy of RT, outcome of treatment and duration of response.75 Gaps in knowledge may extend beyond the level of the primary care physician. In a study of specialist paediatric oncologists in Canada, knowledge and utilisation of palliative RT were found to be inadequate.76 The extent to which a referrer’s knowledge gaps impact on actual RT utilisation has not been established. Referrer’s awareness of available RT services and referral processes. Knowledge gaps regarding referral processes (e.g. how to refer, who to refer to, who to ask for advice) can result in suboptimal RT referral practices. For example, a Canadian study revealed that 25% of primary care physicians in eastern Ontario reported that their referral practices were influenced by uncertainty about referral processes.74 Whether similar knowledge gaps exist in Australia and, if so, their effects on RT referrals warrant further investigation. Referrer’s perceptions and communication of RT, its side effects and its impact on quality of life. Further to having adequate knowledge and understanding of RT and its side effects, referring clinicians need to be able to communicate this information to their patient accurately and in an unbiased manner. Treatment decision making is a shared process between patients

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and their treating clinicians. Clinicians’ own biases and perceptions regarding the efficacy of RT may influence this process. There have been reports of lower rates of RT utilisation in patients with increased comorbidities.50,71 Referrer perceptions may have contributed to this finding. Perceived RT-related side effects and quality of life trade-offs in relation to the perceived benefit of RT have been suggested to influence referral decisions.74,76 Other potential referrer-level factors requiring future attention Referrer’s perceptions of RT-related inconvenience. Referrers’ management recommendations can be influenced by their own perceptions of the practical inconvenience of RT to the patient (family or carers). There may be differences in how referrers and consumers perceive RT inconvenience and the trade-off required in order to benefit from RT. To our knowledge, these have not been examined previously. Service-level factors Waiting lists. Long waiting times (particularly to start treatment) are a source of concern for patients and their referring doctors. An Australian study demonstrated that at least one-third of patients seen at out-patient RT facilities were concerned about waiting times.77 In Canada, Barnes et al. found that delay in obtaining an appointment with an RO and delay in starting RT were identified by primary care physicians to be potential barriers to referral for RT.75 Clinical pathways within the service. Processes within a service that make it difficult for consumers and referring clinicians to contact a radiation oncologist (or other related staff) for advice or referrals may influence RT referrals and RT utilisation. This has not been examined previously. Presence and effectiveness of multidisciplinary teams. Multidisciplinary team (MDT) meetings provide a forum for discussing patients’ cases with input from various specialists, including ROs. MDTs provide the opportunity to overcome barriers relating to gaps in knowledge, bias of individual clinicians and difficulties with cross-disciplinary communication. Boxer et al. reported that MDT discussion is an independent predictor for RT of patients with lung cancer.78 The success of MDTs is likely dependent on several variables. A detailed discussion of these is outside the scope of the present review. However, key factors include the availability of MDTs, meeting frequency (e.g. frequent meetings allow real-time decisions), composition (e.g. breadth of specialist representation), structure (discussion of all cases vs only ‘difficult’ cases) and team dynamics (the extent to which specialist opinions are volunteered and received). Conclusions The availability of infrastructure for the provision of affordable, acceptable and adequate RT services is crucial if opportunity to obtain RT is to be present. Aspects within that service and factors at the consumer and referrer levels have been shown to affect the translation of the opportunity for RT to actual RT utilisation. The framework developed here will facilitate future studies to methodically identify and assess some of the other potential factors

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highlighted herein. This framework may also guide policy makers in implementing future interventions to systematically address the factors influencing RT utilisation.

Competing interests None declared.

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What is access to radiation therapy? A conceptual framework and review of influencing factors.

Optimal radiation therapy (RT) utilisation rates (RURs) have been defined for various cancer indications through extensive work in Australia and overs...
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