Table 2.
Overview of working packages and consensus statements
| Questions | Statements | |
|---|---|---|
| WP1: Patients with cancer at risk of financial toxicity | ||
| 1 | What are the intrinsic factors associated with experiences of financial toxicity, and how do they interact with each other? | A: Irrespective of subjective or objective measurements of financial toxicity, intrinsic factors associated with financial toxicity include: being female, extreme age ranges, ethnic minorities, lower (household) annual income, loss of income during treatment and no or inadequate health insurance coverage (in countries where this is relevant). Although these intrinsic factors have been repeatedly reported to be significantly associated with financial toxicity, it is likely that many may interact with each other, and with other extrinsic factors. LoE: III |
| B: People of low socioeconomic status (SES) are more likely to experience financial toxicity when affected by cancer. SES is a measure of social standing, position or class of an individual or group and is usually assessed using occupational, economic and/or educational criteria of the individual, their household or the small area in which they live. Unemployment and reduced work participation during anticancer therapies are also related to financial toxicity. The extent to which employer or social welfare mitigation strategies (such as paid sick leave) may alleviate this has rarely been investigated. LoE: III | ||
| C: Studies indicate that those who live in larger households, or with dependents, or in social isolation are more likely to experience financial toxicity. Similarly, living alone or being single may also be linked with financial toxicity, but the evidence is less extensive. Family and friends may play a role in helping alleviate financial hardship due to cancer, but evidence on this is currently limited. LoE: III | ||
| 2 | What are the health and disease-related factors associated with financial toxicity (and how do they interact with each other)? | A: There are only a few comparative studies that examined cancer type as a risk factor for financial toxicity, and overall, there is no strong evidence that any single cancer type is a risk factor. There is also scarce evidence of cancer stage or advanced disease as a risk factor for financial toxicity. LoE: III |
| B: Systemic anticancer therapies, including chemotherapy and targeted therapies, can represent as risk factors for financial toxicity, while radiation therapy and surgery are not consistently shown as risk factors. Exceptions may exist for some cancer types, and for some populations for whom the travel burden associated with these treatments may be considerable. LoE: III | ||
| C: A limited number of studies have examined the association between symptoms or symptom burden and financial toxicity. Most of these studies found significant associations with psychological symptoms but less commonly with physical symptoms. However, there is lack of clarity with respect to the recall period for financial toxicity and symptoms. There is also less evidence to confirm that symptoms are risk factors for financial toxicity or outcomes of financial toxicity. LoE: III | ||
| D: Financial toxicity may be more likely to occur close to the time of diagnosis when patients are undergoing primary treatment. Studies that reported objective measures of financial toxicity, such as out-of-pocket (OOP) costs, found them to be higher at the time closer to diagnosis or treatment and as patients approach end of life. However, the evidence is not consistent, and it is unclear how prevalent financial toxicity is in long-term survivors. LoE: III | ||
| 3 | What are the extrinsic factors associated that cause financial toxicity and how do they interact with each other? | A: Generally, the higher the OOP costs of the patient, the higher is the magnitude of financial toxicity, unless there is financial risk protection and other mitigation and copying strategies offered by the publicly funded health system or private health insurance and social security, or charitable programmes and non-governmental organizations’ assistance programmes are available. Irrespective of OOP payments, patients with cancer experience financial toxicity given the impact of disease on the economic situation of their household. LoE: III |
| B: Under comprehensive cancer care within universal health coverage (UHC), financial barriers to access and direct payments to obtain health care are probably modest. However, in numerous countries, certain cancer medications (often new and very expensive) often lack public funding, leading to financial challenges unless covered by private insurance or other complementary schemas. Patients with cancer in publicly funded health systems may still face direct non-medical costs as well as indirect costs, some of which may be mitigated by coverage of benefits due to sickness, therapy and unemployment payment. LoE: IV | ||
| C: Cancer patients who live in rural or remote areas, further away from specialist cancer treatment centres experience financial toxicity more often and to a greater extent. Those patients who have to travel long distances to specialist treatment centres given the spatial clustering of health care facilities faced increased costs and higher risks of financial toxicity. LoE: III | ||
| WP2: Management of financial toxicity during the initial phase of treatment at the hospital/ambulatory settings | ||
| 4 | When and how should cancer patients undergo a financial toxicity assessment? | Health care providers should make a preliminary assessment of the financial impact of disease and treatment on patient and his/her household at the diagnosis or before the start of treatment. As the data on long-term survivors are lacking, whether there is a need for these assessments to continue over time needs further research. A reasonable approach, which requires further validation, might be based on a sequential strategy, starting with the use of a simple set of questions from instruments developed to evaluate quality of life (QoL) as a screening tool, and then using a specific, longer validated questionnaire for further comprehension of the financial problems by the initial single question. LoE: V |
| 5 | In the diagnostic phase of cancer, how might the economic impact of examinations be reduced for patients? | A: A formal, temporary cost exemption of the diagnostic pathway when a cancer is suspected should be offered to all patients and access to services should be free of charge. LoE: V |
| B: Clinicians are advised to ‘choose wisely’ and avoid low-value interventions, including diagnostics and therapeutics, to reduce costs for patients and/or payers: examinations that are not essential to the treatment plan should be discouraged. Navigation into services should be offered by relevant health care professionals. LoE: V | ||
| 6 | How could the economic impact for patients with high disease burden, low performance status and/or severe comorbidities be reduced? | Expensive treatments with a negligible impact on survival or QoL should be avoided. Appropriate and timely early access to palliative care should be offered to all patients, especially to those with advanced cancer, and for whom oncological therapies can produce substantial toxicity with rather modest benefits. LoE: V |
| 7 | Should every patient experiencing or at risk of suffering financial toxicity have right for financial counselling during his/her stay at the hospital/ambulatory setting? | Financial toxicity is an extra burden for a patient, possibly affecting therapeutic outcomes and causing distress for the patient and their families. Thus, it is both ethically and medically reasonable to offer financial counselling to a patient suffering from any form of financial toxicity following screening for financial toxicity. Counselling might produce benefit. Counselling should be given by a dedicated professional (like a social worker) who can assess the patient’s economic situation, knows thoroughly the social security system of the jurisdiction and is aware of modalities to help the patient in his/her economic situation. LoE: III |
| WP3: Financial toxicity during the continuing phase and at end of life | ||
| 8 | Are new treatments (targeted therapies, immunotherapy, antibody–drug conjugates, etc.) increasing financial toxicity? | The very high cost of new cancer medicines contributes to financial toxicity when insurance coverage is absent or partial, and when co-payments are required. In publicly funded health systems covering for cancer care, this occurs more frequently when expensive new agents are prescribed for off-label indications. Treatment toxicities of new treatments, some of which can be severe or persistent, can adversely impact on acute and long-term care needs and function, and may generate additional financial burdens. LoE: II |
| 9 | What is the contribution of cancer drug’s prices to direct costs? | The cost of cancer medicines accounts for almost one-third of the direct medical costs of cancer in Europe, under an UHC schema. For individual patients and their families, the relative contribution of drug costs to their total burden of medical and non-medical costs is a function of the extent of health care coverage and social welfare benefits and varies considerably depending on individual country policies. LoE: II |
| 10 | How can palliative health care teams address patient and caregiver distress and uncertainty from financial toxicity at the end of life? | Because of the high prevalence of financial distress among patients with far advanced cancer, in addition to present physical and psychological distress, it needs to be assessed in all cases. When financial distress is identified, management approaches should include financial counselling, assistance with social welfare entitlements and mobilization of other strategies to cope with distress. LoE: III |
| WP4: Financial risk protection for survivors of cancer and during cancer recurrence | ||
| 11 | Do we need continued long-term assessment for financial challenges during survivorship? | We must prioritize the provision of person-centred care with a focus on assessing the socioeconomic challenges that may arise in the aftermath of cancer. This involves understanding the impact of these challenges and devising practical solutions. A risk-based approach necessitates tailored assessments, with frequency determined by factors such as the cancer stage, the risk of cancer recurrence and the potential for late complications, including secondary cancers. LoE: III |
| 12 | How should/can we build survivorship care delivery models to incorporate strategies for financial risk protection? | A: Institutions and society should embed the ‘Right to be Forgotten’ as a legal framework within all European countries to avoid financial discrimination for those living beyond cancer. European health care providers should be aware of the social and legal implications of the financial discrimination that long-term cancer survivors can be exposed to, despite being cured of their disease. LoE: III |
| B: Institutions and health authorities need to promote models incorporating long-term follow-up strategies such as leveraging telemedicine for follow-up care, careful use of surveillance testing, remote monitoring systems and emphasis on rehabilitative measures. This would help provide financial risk protection to cancer survivors to improve their clinical outcomes including health-related QoL, thereby enhancing overall quality of care. It is mandatory to incorporate mitigation strategies for financial hardship such as online resources for coverage and reimbursement information, educational opportunities and assistance programmes into cancer survivorship plans. LoE: III | ||
| C: Institutions need to include caregivers as important stakeholder in the survivorship care delivery model, ensuring optimal psychosocial support, including for financial issues, can help decrease the familial financial burden. LoE: III | ||
| 13 | Can we deliver targeted financial and employment support strategies? | A: Governments need to develop and implement proactive return-to-work plans for cancer rehabilitation needs and related sickness absence benefits. We need to also ensure employment accommodations, such as the ability to work remotely, flexible work schedules and accommodations at workplace to help address specific disabilities in order to help the patient and caregiver to continue performing productively in their employment. LoE: III |
| B: It is mandatory to promote studies to better understand the costs incurred by survivors, including time and indirect costs as well as the prevalence, effectiveness and cost-effectiveness of workplace accommodations on health and retention of employees who are cancer survivors. LoE: IV | ||
| C: A harmonized normative framework should be set up at a global level with a goal to avoid discrimination, ensure equitable access to employment opportunities and financial services and protect the rights of cancer survivors. LoE: IV | ||
WP, work package.