Cancer as the “perfect storm”? A qualitative study of public attitudes to health conditions

Abstract

AimsOur aim is to identify important attributes of major diseases that shape how they are perceived by the public.Methods and ResultsFour focus groups among members of the public were recruited, in March and October 2016, and used semistructured discussion to explore important attributes of cancer, heart disease, stroke, dementia, mental illness, and infectious disease. Common themes were identified by using inductive thematic analysis.Five themes were identified: fear, impact on family and friends, hope, detection, and prevention. Fear of cancer includes not only fear of death but also of aggressive treatments. Loss of dignity is feared in dementia, while infectious disease raises fear of uncontrollable “plague”; in contrast, people with mental illness may themselves be seen as a potential threat. The impact of cancer and its treatment on family and friends was described as intense and all‐consuming, even for those not involved directly in caring; with dementia and stroke, the family impact is taking on care, including funding, over the long term with little expectation of improvement. Hope is a major theme in cancer and stroke recovery, linked with the need to take action, often expressed in aggressive language of “fighting,” but seen as futile in dementia. Detection difficulties for “silent” cancers mean that real treatment opportunities are missed; cardiovascular and infection risk, however, are seen as easy to identify and act on, whereas mental illness and dementia are seen as poorly diagnosed and with limited treatment options. Prevention awareness is high for cardiovascular disease and infection, lower for cancer, and limited for dementia and mental health.ConclusionAlthough themes overlap across diseases, the specific concerns are different and each condition has a unique profile. Quantifying the relative importance of these themes could allow their incorporation in decision‐making, not only when they occur as a named disease but also in any relevant condition.

Patient-Reported Receipt of Goal-Concordant Care Among Seriously Ill Outpatients—Prevalence and Associated Factors

“…31 Moreover, honest goals-of-care discussions may be undermined by the pressure patients with advanced cancer feel to stay positive and "fight". [32][33][34][35] Finally, we found younger patients were more likely to report goal-discordant care, perhaps because these patients or their clinicians are less likely to prompt goals-of-care discussions as compared to older patients.…”

“…We hypothesized patients with advanced cancer may be less likely to report goal-concordant care than other eligible patients because the distinct pressure patients with advanced cancer and their clinicians feel to stay positive and "fight" may uniquely undermine and delay honest discussions about goals of care. [31][32][33][34][35][36] We also examined prior goals-of-care discussions, hypothesizing that patients who have discussed their goals previously may be more likely to report receipt of goal-concordant care. 22,37,38 We used two items from the enrollment questionnaires: 1) the occurrence of prior discussion(s) with the patient's enrolled clinician; and 2) the occurrence of prior discussion(s) with family or friends.…”

What Aspects of Illness Influence Public Preferences for Healthcare Priority Setting? A Discrete Choice Experiment in the UK

“…The priority given to better conditions is perhaps surprising, given the responses to the more challenging conditions seen in our qualitative work [ 30 ]; respondents talked in emotive terms about the ‘terror’ of a cancer diagnosis or the loss of dignity and independence through dementia or stroke, the ‘lottery’ of incidence of illness, and the shock of an unexpected or delayed diagnosis. Similar emotional power is seen in advocacy for such conditions, and in patient and public response to funding decisions [ 31 ].…”

“…Although attributes of public experience of cancer are well-described in the literature (reviewed by Vrinten et al [ 29 ]) we found little evidence for other conditions. We therefore undertook qualitative research to understand the features that shape how serious illnesses (such as heart disease, dementia and infectious diseases) are perceived by the public (reported separately [ 30 ]). As a second source, and given our ultimate interest in QALY weighting, we sought to identify aspects of illness that are perceived to be inadequately captured by HTA processes in the UK.…”

Quantifying the psychological and behavioural consequences of a diagnostic label for non-cancer conditions: systematic review

“…16,17 There is also evidence that suggests a cancer diagnosis, compared with a non-cancer diagnosis, can evoke a greater fear response because of the anticipated lethality of the diagnosis and preference for invasive treatments. [28][29][30][31][32] Excluding studies reporting on cancer screening ensured the findings of this review could be compared with, but not influenced by, cancer conditions. We also excluded studies that used hypothetical scenarios and studies labelling individuals with intellectual disabilities and/or attributes such as race, sexual identity or sexual orientation (see Supplementary Table 3 for inclusion and exclusion criteria).…”