Pain and its interference with daily living in relation to cancer: a comparative population-based study of 16,053 cancer survivors and 106,345 people without cancer

Pain is distressing and debilitating and can profoundly impact quality of life (QoL), including the ability to work, move, and socialise [1, 2]. Globally, nearly 20% of adults suffer from pain [3]. Pain is one of the most common symptoms reported in people diagnosed with cancer [4]. Cancer survival is increasing in many higher income countries, including Australia, and the majority of people diagnosed with cancer now survive long-term, necessitating increased focus on survivor health and well-being [5]. Combined with demographic change, this means the number of individuals living with cancer is increasing rapidly and, in 2020, the five-year prevalence of all cancers worldwide (excluding non-melanoma skin cancer) led to estimates of over 44.1 million people affected [6].

Little is known about pain in community-dwelling cancer survivors and how it relates to other adverse outcomes, such as psychological distress and reduced QoL. Cancer is heterogeneous and evidence quantifying pain outcomes for different cancer types is also very limited, as is evidence on pain sufficient to interfere with work and home duties — as distinct from pain in general [7]. Most studies to date have involved small samples, single cancer types – mostly breast cancer – and/or lacked comparison to individuals without cancer. Of the 67 studies identified in the literature review (Additional file 1), 50, including the two studies based on Australian data, focused on assessment of change in the experience of pain over time in cancer survivors; they did not include a cancer-free control/comparison group. Only 17 studies included a comparison group of people without cancer, but they included little evidence for multiple cancer types or clinical characteristics. Previous studies have also varied in the measure of pain used, recall period, study design, characteristics of cancer survivors, and selection of controls. We could not find any comprehensive study on the relationship of cancer and pain, and the joint relationship of these to other adverse outcomes, such as psychological distress and reduced QoL.

We aimed to quantify the prevalence of pain and pain sufficient to impact on daily activities in community-dwelling people with and without a cancer diagnosis, and its relation to physical functioning limitations, psychological distress, QoL, and self-rated health. We investigated pain and high-impact pain overall, for 13 cancer types, and according to cancer stage, time since diagnosis, and recent treatment.

This study finds that pain is common among Australian community-dwelling adults, with around one-third of participants reporting moderate to very severe bodily pain and around one-in-eight reporting moderate or extreme high-impact pain. Cancer survivors have somewhat elevated levels of pain in general, with pain varying markedly by cancer type. Greater levels of pain were observed in survivors of blood cancers such as multiple myeloma and leukaemia and poor prognosis tumours such as lung cancer, and lesser or no elevations in pain were observed for many common cancers such as those of the breast, prostate, and colorectum, as well as melanoma.

Pain was greater in those with a more recent diagnosis of cancer, those with advanced disease, and those reporting recent cancer treatment, compared to other survivors and to participants without cancer. Cancer survivors not reporting recent cancer treatment, who constitute the majority of survivors, had levels of high-impact pain similar to the general population. This study, to our knowledge, is the first to consider different cancer types and stages separately, to compare people with and without cancer, and to emphasise pain that has an impact on work and daily life.

Cancer is a highly heterogeneous condition with treatment options depending on factors such as type, location, and stage; cancer pain during and after the treatment phase could be secondary to cancer, resulting from cancer treatment, or for other reasons [4]. We identified 17 previous studies which included comparisons with the general population or a control group, but differences in methods made direct comparisons difficult (Additional file 1). Only four studies were similar large-scale studies using comparable outcome measures; these did not include analyses by clinical characteristics, but indicated higher prevalence of bodily pain [20‐22] and high-impact pain [23] in cancer survivors compared to people without cancer. Previous findings of higher odds of chronic pain in cancer survivors than those without a cancer history, [20] including in survivors of kidney, lung, colorectal, uterus cancers and haematologic cancers, as well as comparable odds in survivors of bladder, prostate, breast cancers and melanoma, are consistent with results of this study; higher odds of chronic pain associated with cancer of the cervix, head and neck, ovary and sarcoma are to some extent reflected in the observed elevated levels of outcomes in the 'other cancer' group in this study.

Pain burden at the population-level peaks in late middle age, attributable to injury and the presence of medical and musculoskeletal conditions such as arthritis [24]. For cancer survivors, cancer type and treatments received are likely to contribute additionally to pain. This includes cancer-related bone and other tissue pain arising from the underlying disease, as well as pain arising from treatments such as chronic post-surgical pain, chemotherapy-induced peripheral neuropathy, and radiation-induced pain [25, 26]. Findings regarding the association between pain and recent treatment for cancer are consistent with previous research (Additional file 1). Invasive treatments for lung cancer [27] are likely to contribute to the high prevalence of pain and comorbidity in this tumour type. A range of factors are likely to contribute to the higher prevalence of bodily pain and high-impact pain among survivors of multiple myeloma. These include osteolytic bone lesions – with bone pain affecting up to 90% of survivors – chemotherapy-induced peripheral neuropathy, and neuralgia caused by reactivation of herpes zoster virus [28]. Multiple myeloma survival has increased considerably over the last few decades and active disease episodes are interrupted by longer periods with disease inactivity, when many patients continue to live with intense pain interfering with their daily activities [28]. Specific cancer types, including multiple myeloma, lung, prostate, breast, and kidney cancer, are also associated with painful bone metastases [28]. The exact reasons for elevated pain in survivors of thyroid cancer are unclear [29, 30]. These findings reinforce the need for pain assessment and targeted pain management strategies, tailored to cancer type and stage of cancer progression or recovery.

While these results demonstrate elevated levels of pain and high-impact pain among cancer survivors, they also indicate that for people with many common cancer types – including breast, prostate, and colorectal cancers and melanoma – levels of pain do not differ, on average, from those of the rest of the population. Similarly, cancer survivors not receiving treatment within the past month – who constitute the majority of survivors – do not have elevated pain levels. Findings regarding greater differentials in high-impact pain in cancer survivors versus people with no history of cancer at younger ages could be due to lower levels of background pain in the general population at younger ages, higher multimorbidity in older ages, as well as greater acceptance of cancer pain among older survivors and better coping strategies [31].

Overall, the findings from this study and the broader evidence [13] highlight the need for continuous assessment of physical and psychological morbidity, and of the well-being of cancer survivors, better management of pain, and targeted intervention to enhance long-term function and high QoL. Current pain management is often fragmented and not integrated appropriately into routine care. Our findings highlight a need to ensure that interventions to address pain are available to people during and after cancer treatment. The findings suggest that people diagnosed with cancer, particularly those with blood cancers and lung cancer, may benefit from monitoring during and after completion of treatment, for cancer-related pain. Cultural factors have been shown to influence experiences of pain and this is being explored in a future paper within the 45 and Up Study. Overall, 80% of participants in this study were born in Australia and around 90% report speaking only English in the home. Consideration of cultural factors is important in understanding and managing pain in people with and without cancer.

Our findings indicate that physical functioning limitations, psychological distress, and fair/poor self-rated health and QoL are three to 11- fold in those with versus without high-impact pain, both in people with and without cancer. These general person-centred outcomes varied to a greater extent according to level of high-impact pain than according to whether or not participants had cancer. Based on evidence from this study as well as previous research, pain and its interference with daily life are likely key drivers of physical functioning limitations, psychological distress, and reduced QoL, in people with and without cancer [32, 33]. This may be influenced by the bidirectional and mutually reinforcing relationship between pain and distress. Further research into the intersection between physical pain and mental health is urgently needed, particularly for those who experience the greatest burden from pain.

This study is large-scale and population-based, with linkage to cancer registry data. This enabled comprehensive comparative quantification of pain experienced by individuals living with cancer in the community in relation to background experiences of pain in the broader community, including in different population subgroups with varying cancer characteristics. Participants in cohort studies, including this study, are healthier than the general population [34]. Hence, while our absolute estimates of cancer prevalence and pain may not be directly representative, PRs, which are based on internal comparisons, are likely to be generalisable [35]. Temporal information on pain in relation to incident cancer diagnosis was not available as information on pain was collected only in the follow-up survey. Pain is based on self-report; linked clinical or qualitative interview data were not available to further understand how participants’ pain was addressed and whether they were currently able to access help from cancer or primary care providers. The survey period (2012–2015) meant that participants were unlikely to have received emerging therapies such as immunotherapy.

Our results highlight that pain is common in the community and more common among cancer survivors than those without cancer. Pain prevalence varies by cancer type; survivors of multiple myeloma, leukaemia, and lung cancer had the highest prevalence of bodily pain and high-impact pain. No elevation in pain was observed for some cancer types, including breast, prostate, colorectum, bladder, and melanoma. People with pain experience an increased risk of poor physical functioning, mental health, and QoL, regardless of whether or not they have had cancer. Targeted interventions to mitigate and prevent pain, including high-impact pain, are needed to improve well-being after cancer.