On the occasion of the International Day, the Federation of voluntary associations in oncology relaunches an appeal: “More research and better access to screening, diagnosis and therapies to eliminate inequalities”
Often forced to the margins of society on a social and professional level, disabled people (about 3.1 million in Italy, according to the data reported by Istat in the latest report dedicated to disability in our country) are treated as “series B” patients also in the oncological field. In fact, in the field of early diagnosis and access to therapies, there are considerable problems compared to the rest of the population. A theme, that of the quality of care for these people, recently brought to attention by a series of articles published in the journal The Lancet Oncology
. And that the Italian Federation of voluntary associations in oncology (FAVO) shares and relaunches on the occasion of the International day dedicated to the rights of persons with disabilities, which will be celebrated on Saturday 3 December. An appointment wanted since 1981 by the United Nations Organization (UN) to increase awareness and attention to problems related to disability and the commitment to guarantee the dignity, rights and well-being of disabled people with concrete actions. Even in the health sector. And, specifically, the treatment of tumors.
Growing numbers
The difficulties that people with a disability (congenital or acquired, motor or intellectual) are called to face when they fall ill with cancer represent a neglected theme in medicine. This is also because, until a few decades ago, the life expectancy of these individuals was reduced compared to that of healthy peers. Today, however, the progress achieved by scientific research and the support guaranteed on a social level allow them to reach adulthood with increasing frequency. And in many cases also the elderly. «An encouraging result, on the one hand – he explains Elizabeth Iannelli, general secretary of FAVO -. But that also brings with it a greater likelihood of develop a number of chronic diseases more common in the second half of life: as for the note and tumors. As a result, the total number of cases involving these people is set to increase. We ask that the country, on an institutional and scientific level, consider this aspect and implement a series of measures to make the health system more inclusive and truly universal, facilitating access and the diagnostic, therapeutic and assistance path for disabled people”. A fundamental step, considering also that some of these patients could find themselves facing the tumor and treatment without adequate support from family members, especially if the diagnosis arrives at an advanced age.
Inequalities
Compared to the large amount of data produced daily by the scientific community, those relating to disabled patients, who are very rarely involved in clinical trials, represent an infinitesimal part. Nor are their disabilities adequately accounted for in epidemiological studies. But not only. In assessing the overall conditions of the sick, the weight of the disability is not yet recognized adequately. And as a result, health systems are not able to provide the “special” assistance these patients need: in terms of availability of highly qualified personnel, infrastructure and machinery best suited to their needs, communication strategies and psychological support effective and aimed at both disabled people and their caregivers. Moving on to the more practical aspects, the analysis conducted by Liza Iezzoni (director of the Center for Research on Health Policies, Mongan Institute, of Massachusetts General Hospital in Boston) recognized three priorities to enhance assistance to people with disabilities affected by cancer: increase participation in cancer screenings (several studies have shown lower response rates for breast and cervical cancer screenings, an aspect also due to the absence of more accessible machines for these patients), facilitate the diagnostic path (difficulty using imaging tables and machines often leads to delays in diagnosis), optimize access to care (there are few data available on their efficacy in these patients) and at follow-up (several studies show reduced access to hospitals for check-ups and therapies compared to people without disabilities). Without considering then the necessary rehabilitation. «Representing a community of thousands of Italian cancer patients, with FAVO we feel like sharing all the recommendations disseminated by Professor Iezzoni – adds Iannelli -. The work to be done is on various levels. To guarantee an adequate healthcare offer, it is first of all necessary to start from the numbers. Today we don’t know how many Italians there are who, already struggling with a disability, later fell ill with cancer. It is also necessary to increase the awareness on the part of healthcare professionals of the oncological problem linked to disability. And eliminate all barriers, physical and cultural, which often lead these people not to know the opportunities available to them and to turn less frequently to health institutions”.
Additional difficulties
The concept of disability has evolved over time: going from a strictly medical aspect to one more oriented in a psychosocial key. It was the World Health Organization, in 2001, that defined disability as «a condition that is part of human life» and which is characterized by «a series of limitations that derive from the interaction between health conditions and certain factors contextual: environmental, physical and social”. Functional disabilities can reduce mobility, vision, hearing, communication, learning, memory and, more generally, mental health. “Very different categories of patients come together in the definition of disability,” says the oncologist Paola Varese, president of the Scientific Committee of FAVO -. For a correct and comprehensive assessment, a wide range of factors must be considered: the type of disability, the related limitations, the proportion between the expected benefit and the probability of side effects of a treatment, the interference of oncological treatments with those for the disease pre-existing condition, life expectancy, a patient’s wishes and the presence of a caregiver or support administrator’. The best example to describe this complexity is represented by patients suffering from an inflammatory neurological disease (such as multiple sclerosis or other demyelinating diseases) the degenerative (such as Alzheimer’s and Parkinson’s) who discover they also have cancer. «Many oncological treatments, such as immunotherapy, could aggravate the course of these diseases. Others, such as platinum-based chemotherapy and taxanes, make sensory symptoms worse due to the direct side effects of treatments. This high complexity often translates into reduced opportunities for treatment due to the lack of integration between services – the specialist points out -. Never as in this context is it necessary integrated care planningwith a real multidisciplinary assessment that allows for the development of an individualized treatment plan”.
Higher risk of cancer
To this we must add that people with disabilities can get cancer more easily. An aspect due to various factors, which involve lifestyles (greater attitude to cigarette smoking and a sedentary lifestyle), the need in some cases to undergo more frequent radiographic examinations (with an increased risk of developing certain cancers linked to exposure to ionizing radiation) and a general aging process which tends to occur earlier than in people without disabilities. Two studies published between 2020 and 2021 highlighted a higher risk for people with disabilities of developing certain cancers (breast, cervix, colorectal, prostate, and non-Hodgkin’s lymphoma) compared to the rest of the population. This is still preliminary evidence, which however confirms how important it is to invest in research in this area as well.
Intellectual disability
As for people with intellectual disabilities, the second meta-analysis coordinated by Anne Boonman (researcher in the department of primary and community care at the Radboud University Medical Center in Nijmegen, the Netherlands) showed that patients are more vulnerable even during the therapeutic process. This is basically for three reasons: greater physical frailty which most exposes them to the side effects of therapies, difficulties in complying with the treatment plan from start to finish and the limits in managing the decision-making aspects to be shared with your oncologist during therapies. “Intellectual disability has multiple nuances and represents a problem within a problem – clarifies Varese -. In oncology, more than in other fields of medicine, the patient’s active participation in the therapeutic decision-making process is crucial: by virtue of the margin of uncertainty on the course and the risk of toxicity. Many intellectually disabled people are not recognized as such for the purposes of the law and therefore no one is entitled to decide on their behalf”. FAVO, together with INPS and the Italian Association of Medical Oncology (AIOM), fought to introduce the online oncological certificate in order to simplify, accelerate and improve the correct assessment of civil disability. «But there is still a lot of work to be done – concludes Iannelli -. What we can promise is that we will never leave the sick alone, especially those in a more fragile condition also due to a previous mental, physical or motor disability. And we will tenaciously support the values of public health, with a view to a global and continuous taking charge of the patient and his family”.
December 2, 2022 (change December 2, 2022 | 10:58 am)
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