Main finding of this study
This study represents a stakeholder-informed conceptualisation of financial effects in the course of a tumour disease for the German health- and welfare context based on our empirical results. Building on the conceptual model presented, we will develop the first German PROM to assess subjective financial distress.
Informed by a systematic literature review, qualitative interviews with cancer patients and a focus group with social services representatives, we identified three construct-dimensions for our model. The first dimension consists of actual and anticipated financial disadvantages, divided into (anticipated) direct medical /non-medical costs and indirect costs. These financial disadvantages could affect subjective financial distress directly or indirectly. In the latter, the impact on distress is moderated by coping strategies. This second dimension includes not only behavioral efforts to deal with actual or/and anticipated financial disadvantages, but also cognitive efforts. In the third dimension, subjective financial distress is operationalised and concretised in different aspects of daily living in which distress can be expressed.
What is already known on this topic
Some universal models describing financial distress in the context of a cancer diagnosis and treatment have already been published. One of the first was presented by Carrera et al. in 2018 3. In this model, subjective financial distress results from cancer-related expenditures and reduction in wealth and its combination with the patient's anxiety and discomfort of their cancer experience. Witte et al. (2019) proposed a model in which objective financial distress including direct and indirect costs leads to subjective financial stress, which consists of a material, psychosocial and behavioural component. Subjective financial distress, in turn, can contribute to financial toxicity 5. In the model by Lueckmann et al. (2021), that is based on the model of Carrera et al., bureaucracy is integrated as one determent for subjective financial distress 46. Furthermore, they found that the perception of varying levels of subjective financial distress depends on the financial adaptations made in response to objective costs. These coping strategies were categorised into a reduction in expenditure and an increase in resources 46. Lueckmann et al (2021) mentioned expected costs as a possible source of distress, but doesn´t include this, in our opinion, enormous relevant dimension in their model 46.
What this study adds
Common to all three models is the distinction between objective and subjective financial distress in common, which we would like to build upon. However, we propose a model that is characterised by additional and specified dimensions. First, we systematically concretised the model by dividing objective financial distress into actual and anticipated disadvantages in terms of indirect costs, direct medical costs and direct non-medical costs. Thus, we underline the enormous impact of expectations and anticipation on subjective financial distress. It is remarkable that the subcategories of direct (non)-medical costs we established, are consistent with those of Lueckmann et al. (2020) 20 (table 4). Second, our model not only focuses on behavioral effort, as pre-existing models do, but also on cognitive effort. Both cognitive and behavioural reactions mediate between stressors and distress, manage the source of stress, and regulate emotional responses 19,47. Although cognitive coping strategies have not been considered in models on financial hardship of cancer patients, our results are partially in line with the study by Head et al. (2018) on coping with financial consequences of cancer (e.g. information seeking; acceptance or repression of thoughts and sorrows) 48. Third, as in previous models subjective financial distress remains vague, we developed a structured and specified domain of subjective financial distress, which is positioned in daily life and every day practices, e.g. including job-related challenges, limited social participation and bureaucratic obstacles. This conceptualisation of subjective financial distress is an added value in particular for a structured social services counselling, as the specific areas in which support is needed can be determined intuitively.
To our knowledge, this is the first comprehensive model for the German context that provides the conceptual basis for the development of a PROM to capture financial effects of cancer experienced by patients and to assess their subjective financial distress in the future. Our analyses indicated that healthcare specific characteristics need to be incorporated into the model as country- specific stressors mediate the distress. The German healthcare setting is characterised by a complex interplay of healthcare and welfare stakeholders. The compulsory health insurance, as either statutory (90% of the German population) or private, covers most health care costs, so that the extent of out-of-pocket costs is limited. During illness, sickness benefits are legally mandated for all individuals to mitigate income losses, providing approx. 70% of an individual's regular gross income for up to 78 weeks upon application. Additionally, welfare benefits such as unemployment benefits or reduced earning capacity pensions can be claimed. These characteristics determine the degree of actual and, especially, anticipated objective financial burden. However, it is difficult to navigate the German system due to the various parties involved in applying for support benefits, which leads to distress caused by administrative hurdles. The influential component of country-specific characteristics also applies to other aspects of daily living. While coping strategies refer to the individual and occur universal, they can also be influenced by the socialisation of society. This country-specific approach is supported by another previously introduced model for the Italian context by Riva et al. (2021) which is comparable with our conceptualisation in terms of complexity of categories and relevance to everyday life 49. Thus, the categories family, job and bureaucracy are in line with the categories we call family, employment and navigating the health system. Comparing our model items with results from studies in other countries, it becomes evident that the categories, we identified, are universal, while the content of each category remains country-specific. Our model could therefore also be adjusted to other countries with universal healthcare coverage.
We propose to understand the model as the overall “financial effects of cancer experienced by patients” instead of describing it in terms of “financial toxicity”. The term “toxicity” reflects the extent to which something is harmful to the cancer patients and we argue that it reflects the outcome rather than the multi-dimensional construct itself. However, it is necessary to measure the entire construct to determine patients already at risk for financial toxicity and to understand the phenomena exhaustively.
Based on the presented conceptual model, we will develop and validate a questionnaire as a new PROM for financial effects of cancer in Germany using a large sample of patients suffering from different types of cancer. The results of this quantitative study will shed light on the correlation of and interaction between the different domains in our proposed model 17.
Limitations of this study
Despite careful selection of the study design, our study has limitations. It should be noted that the recruitment of patients who were at high risk of experiencing subjective financial distress was limited. The majority of the interviewed patients were married, employed and received sick pay. Consequently, the perspectives of elderly individuals or cancer survivors may have been underestimated in our findings. Lastly, due to COVID-19 restrictions, the interviews in the outpatient setting had to be conducted unsing online videoconferencing software. Some interviews experienced minimal technical issues that may have influenced the flow of the narratives. Same can be applied to the focus group participants of the social services. Moreover, the systematic literature review focussed on the subjective financial distress, as we assumed that this concept had not been studied exhaustively. This assumption might have led to an underestimation of other dimensions in our introduced model, even though we addressed them in our qualitative studies. Furthermore, although the systematic literature review identified a total of 8 out of 46 studies from Germany, the majority of studies were carried out in other healthcare settings. To increase comparability, we only included studies from high-income countries with universal healthcare coverage and matched results with identified dimensions of our qualitative studies using a qualitative content analysis.