“Double whammy”: a rapid review of rural vs urban psychosocial cancer experiences and telehealth service in five countries during the COVID-19 pandemic

Introduction

With increased rates of survivorship, cancer is considered a long-term condition with biological, psychological and social components (Institute of Medicine, 2008). It is known that people with cancer, and those who care for them, exhibit high levels of distress and other mental health complications throughout the course of their cancer journey (Recklitis & Syrjala, 2017) which often persist beyond completion of medical treatment (Lu et al., 2016). Psychosocial stressors (e.g., emotional distress, role change, adjustment difficulties, financial and employment insecurity) have been associated with poorer functional outcomes for cancer survivors, with evidence of bi-directional and cumulative effects (Institute of Medicine, 2008).

From its first declaration as a pandemic by the WHO (World Health Organisation, 2020a) in March 2020, healthcare service delivery has been severely altered and impacted in every country around the world by the emergence of the COVID-19 virus. The pandemic has potentiated multiple psychosocial stressors through its impact not only on health, but also on employment, finances, access to services and social support. Evidence of a disproportionate psychosocial and medical impact of this pandemic on those with non-COVID conditions, particularly chronic conditions such as cancer, is just emerging (Boakye, Jenkins & Sharma, 2020). Across the world, the appropriate and necessary prioritization of the COVID-19 response has meant that there have been significant disruptions to the treatment, management, rehabilitation, and follow-up of other medical conditions, including the necessary care for cancer (World Health Organisation, 2020b). Moreover, irrespective of their unmet cancer care needs, research also indicates that people with cancer are at a higher risk of contracting COVID-19 itself and experiencing disproportionately higher adverse sequelae (Liang et al., 2020). Those with cancer, therefore, are a highly vulnerable group that warrant particular attention by psycho-oncology teams. Given the systemic immunosuppressive state of people with cancer (Liang et al., 2020), it follows that people with cancer may feel highly anxious about contracting COVID-19 itself, and justifiably fearful of experiencing serious (and possibly fatal) complications from the virus. Significant mental health problem prevalence, and gaps in mental health supports, for cancer populations have been observed during the pandemic response (Wang et al., 2020). There has also been some suggestion that cancer patients and survivors are at risk of fears resurfacing of prior traumatic medical experiences (Nekhlyudov et al., 2020). The pandemic has been described as “uncertainty upon uncertainty” for people with cancer, with multi-pronged psychosocial ramifications (Young et al., 2020).

Even prior to the pandemic, research indicated that anxiety reduced the quality of life for people with cancer and negatively impacted treatment compliance (Greer et al., 2008). A self-perpetuating cycle of pandemic-induced anxiety and risk-mitigating behavioural changes (e.g., social avoidance), coupled with strategies designed to reduce virus spread such as physical distancing and isolation, seems likely to occur. The immune-compromised state of people with cancer, and the existence of late effects of cancer treatments in cancer survivors, such as reduced lung function (Carver et al., 2007), compound these challenges in comparison to other chronic diseases. Given that behavioural strategies of avoidance and withdrawal are central maintaining factors within cognitive behavioural models of anxiety (e.g., Clark, 1986) and depressive disorders (e.g., Moorey, 2010), it is likely that cancer populations living through this pandemic are psychologically, as well as medically, vulnerable.

The psychosocial issues experienced by those with cancer are heterogeneous, and there are health and wellbeing disparities in existence amongst different cancer populations and groups (Carethers et al., 2020). An international meta-analysis identified significant health inequality between rural and urban cancer populations, specifically those living in rural areas are significantly more likely to die from cancer than their urban counterparts with social ecological mechanisms underlying this including individual, institution, community and policy level factors (Carriere et al., 2018). This is not just limited to adults, with some evidence that rural paediatric cancer patients experience poorer treatment experiences and outcomes (Tarnasky et al., 2021). A recent Australian report (NSW Parliament, 2022) outlined that, even prior to COVID-19, the limited availability of primary care and GP services in regional areas in New South Wales has meant that opportunities for early intervention are being lost, and that when individuals do eventually access medical assistance they then generally require more acute and complex care. Moreover, the disparate nature of service provision for the treatment or prevention of cancer, even prior to the challenges the pandemic threw at healthcare provision, has required rural people to engage with multiple services and providers where the risk of poor communication can result in rural people with cancer getting “lost in the system” (NSW Parliament, 2022). Limited and fragmented supportive care spread across different providers and locations is an ongoing challenge for all rural people, but ultimately places rural people with cancer at disproportionate risk of burden by psychosocial stressors, compounded by poorer access to psychosocial supports.

Defining what is “rural” differs from country to country, with varying synonyms and location-specific definitions (e.g., regional, remote, non-urban, non-metropolitan) utilised in the literature, and these definitions can also be conflicting leading to confusion and challenges when attempting to compare data (Bennett et al., 2019). For example, studies from Australia may conceptualise distance to the closest metropolitan centre very differently to studies from the United Kingdom. Hence, it is appropriate to take a place-based approach to understanding the psychosocial support needs of people with cancer during this pandemic, given the additional challenges COVID-19 and its management brings. For the purposes of this article, the term ‘rural’ will be used consistently throughout given the literature reviewed utilises varying terms to refer to people living outside of metropolitan centres with reduced accessibility of specialist services.

In Australia and across the world, rapid transition to remote service delivery models via telehealth has been necessary as a result of measures (e.g., physical distancing) designed to reduce transmission of COVID-19 (Thomas et al., 2020). What is becoming clear, however, is that this transition has not necessarily improved equitable access to services across disparate geographical regions. Countries with ready access to broadband and digital devices have been enabled to move more quickly into the remote service provision space, whilst other countries (and even socially disadvantaged locations within technologically-advanced countries) lacked the infrastructure, hardware and technical resources to modify their practices (Webster, 2020). For Australia, equivalent levels of distress in rural and urban cancer populations (e.g., Van Der Kruk et al., 2021) is not necessarily associated with equivalent service provision (NSW Parliament, 2022). There has been some research identifying disparities in cancer care and outcomes between urban and rural areas (e.g., Butow et al., 2012), and telehealth is recognised as an additional barrier for vulnerable populations such as Aboriginal Australians (NSW Parliament, 2022). Hence the question remains as to whether the COVID-19 era of service provision is perpetuating or mitigating these disparities.

There may be inadvertent “positives” to being rurally located in these times. For example, telehealth will likely have significantly reduced travel time associated with some health care appointments for those in rural areas. There may also be benefits of rural lifestyle in terms of COVID-19 transmission as a result of reduced density living and fewer government restrictions on social contact and travel. However, given the recent spread of the highly transmissible COVID-19 variants throughout regional Australia (NSW Health, 2021), for example, there are risks to the maintenance of the feeling of relative safety in rural communities.

There are, however, indications of wide-ranging impacts of the COVID-19 pandemic on physical, psychosocial and economic wellbeing of people with cancer, compounded by cancer treatment itself, in the context of the ‘new normal’ of social distancing and uncertainty (Jammu et al., 2021). Cancer survivors who have completed treatment are an additional necessary consideration in this pandemic, given persistent mental health issues are well-recognised within this group (Lu et al., 2016). Identifying vulnerable client groups is imperative, alongside the prioritisation of COVID-19, to ensure appropriate interventions are made available and healthcare systems can prioritise additional identified care needs when resources become available (Boakye, Jenkins & Sharma, 2020). Rapid reviews are recommended by the WHO to provide timely, high-quality evidence in order to support decision-making in health policy and systems (Tricco et al., 2017). As the World Health Organisation (2021, para. 4) argued, this will allow services to “build back better” for the future, for both cancer patients, survivors, and those who care for them.

Materials and Methods

Results

Based on the above selection criteria, and after duplicates were removed, the full text of 98 articles were reviewed. After reviewing article results and discussion, those that did not report rural results or did not report rural data relevant to the review aims, were removed, yielding 15 articles for inclusion in the narrative synthesis. Of the 15 articles, 10 considered psycho-oncology aspects of wellbeing, and five considered telehealth technologies. The articles originated from the USA (n = 7), Australia (n = 4), India (n = 2), Italy (n = 1), and Canada (n = 1). Table 1 shows that of the ten studies exploring psychosocial issues, seven analysed cross-sectional data of urban and rural populations, two analysed a rural-only population, and one was an expert opinion. Two of the cross-sectional studies included some qualitative data in a mixed methods design. Seven articles were assessed as Tier 1 and three as Tier 2. There was consensus amongst the Tier 1 and Tier 2 literature. However, of the Tier 2 articles, two were oral presentation abstracts of cross-sectional research data and one was an expert narrative opinion, for which greater caution should be utilised in its interpretation.

When considering pandemic-related psychosocial issues experienced by people with cancer, all ten articles evinced a myriad of psychosocial concerns experienced by people with cancer in the context of the pandemic, ranging from worry and distress (e.g., Davis et al., 2021) to health access and burden (Singh et al., 2020), addressing this review’s first aim. When considering this review’s second aim of comparing the psychosocial experiences of rural vs. urban people with cancer, the results indicate significant disparities with less favourable outcomes for rural populations. Of the nine quantitative studies, three (two Australia, one USA) reported poorer emotional wellbeing for rural patients (Davis et al., 2021; Mama, Cardel & Schmitz, 2020; Zomerdijk et al., 2021), and this was similarly identified in the expert opinion (Boakye, Jenkins & Sharma, 2020). Davis et al. (2021) further noted older rural participants reported greater negative impacts on access and wellbeing than younger participants. Two studies (one USA and one Italy) reported reduced perceptions of quality of life for rural cancer populations (Ferrara et al., 2021; Mama, Cardel & Schmitz, 2020), and one USA study identified more social disconnectedness in those living in rural areas (Jacobs & Ellis, 2021). Three studies considered health service access, with two studies (India) evidencing significantly reduced health care access and increased care delays in those from rural areas compared to their urban counterparts during the pandemic (Singh et al., 2020; Singh, Rai & Ishan, 2021). The results from the qualitative data of one Canadian study (Galica et al., 2021) suggested whilst some supportive care access may have ceased, some older rural cancer survivors appreciated a sense of insulation against COVID-19 as a function of their geography. This protective effect of geography was also found in one USA study (Daniels et al., 2021), wherein the urban sample reported feeling more at risk of contracting COVID-19, and experienced greater daily life change, than the rural sample. Overall, however, social and health support access, and psychological distress-related symptoms were most likely to be worse in rural samples, with older people particularly impacted, during the COVID-19 pandemic.

The final aim of the review considered whether the rapid move to telehealth service delivery mitigates or reinforces the service provision inequities which in turn lead to disproportionate burden of adverse psychosocial inequities experienced by rural people with cancer. Five studies considering telehealth use during COVID-19 were reviewed. These included one Tier 2 expert opinion (Australia) and four Tier 1 studies, of which one was a mixed methods study (Australia), two were cross-sectional studies (USA) and one was a retrospective study (USA). All five articles recognised that the use of telehealth during the COVID-19 pandemic could go some way to improving health equity and bringing psychosocial and economic benefits to rural cancer populations, including reducing travel time and travel costs and increasing access to health and care providers (Brunelli, Fox & Langbecker, 2021; Jewett et al., 2021; Keefe et al., 2020; Patt et al., 2021; Rariy et al., 2021). However, all the Tier 1 studies identified challenges with telehealth that may impact upon the above benefits. Three USA studies found inadequate technology access and capabilities were problematic for rural cancer populations (Jewett et al., 2021; Patt et al., 2021; Rariy et al., 2021). Furthermore, one of the studies identified significantly reduced uptake of telehealth by rural cancer patients (Jewett et al., 2021), and an Australian study (Brunelli, Fox & Langbecker, 2021) found that whilst both rural and metropolitan healthcare providers held positive attitudes towards telehealth use, clinician uptake remained low.

Discussion

This rapid review identified that people with cancer are experiencing a “double whammy” of COVID-19 disease risk burden and psychosocial impact. The immunocompromised state of patients and the impact of long-term treatment effects in survivors, that is not similarly experienced in other chronic conditions, makes this population in high need of consideration. This rapid review further examined the experience of rural people with cancer during the COVID-19 pandemic and found that the psychosocial wellbeing of rural people is disproportionately impacted. Moreover, strategies to mitigate pandemic impacts, such as telehealth, are not automatically adequate for rural people with cancer, with deliberate care required to ensure appropriateness for individual client circumstances. There may be some protective factors associated with insulation as result of ‘ruralness’, some of which appear linked to the limited spread of COVID-19 in rural communities, in contrast to the higher rates of transmission in urban areas predominately in the early days of the pandemic. However, the virus is now increasingly less urban-centric, and has spread quickly to regional, rural and remote communities (Bradford et al., 2021). As the virus continues to spread and governments are hoping to achieve endemic virus status, this may reduce the sense of relative safety in rural communities. Further, the healthcare resources of rural towns are minimal compared to urban centres (e.g., NSW Parliament, 2022). Rural hospitals have relatively reduced contingency and greater vulnerability to becoming overwhelmed with the COVID-19 burden, resulting in flow-on effects to primary health settings and impacts to continuity of care for rural people affected by cancer in addition to exacerbation of their psychosocial concerns.

Conclusions

The pandemic has inarguably interrupted health care provision AND altered health care delivery for the foreseeable future and beyond. Hence the goal of “building back better”, including considering how pre-pandemic support services and resources can be best utilised in this potentially unpredictable pandemic future, should be a goal for all working in the psycho-oncology space. Specifically, the available evidence suggests that people with cancer are particularly medically and psychologically vulnerable during this pandemic, and rural people with cancer more so. Rural people with cancer are experiencing greater psychosocial distress during the pandemic than those living in urban areas. The necessary measures designed to limit the transmission of the COVID-19 virus are having a disproportionate detrimental effect on rural people with cancer, increasing social disconnectedness and reducing access to supportive resources and health care professionals. Given that cancer is a biopsychosocial experience, and the psychosocial needs of rural people with cancer are demonstrably greater than those of people from urban areas, these needs require focused clinical attention. If the psychosocial needs of rural people with cancer are not effectively addressed, treatment inadequacy and reduced functional outcomes are likely. To rectify the health inequity between rural and urban cancer patients, this review clearly points to a need to improve and invest in appropriate psychosocial support services for rural patients and their families.

The technology designed to support remote access to services is only a part solution, as the infrastructure is not consistently available at a sufficiently high quality for all rural people. There also remains some challenges in telehealth uptake by both rural patients and clinicians. Recognising and attempting to ameliorate the disproportionate impact of the COVID-19 pandemic on rural people with cancer is necessary for all clinicians providing psycho-oncology care. Strategic screening for distress as uniquely evidenced by rural people with cancer, coupled with clinical training to recognise distress via remote technologies when help-seeking may not be a characteristic of rural people affected by cancer, are key foundations in this process.