Burden of disease
A holistic view
The National Institute for Public Health and the Environment (RIVM) provides information on public health and care as orderd by the Ministry of Health, Welfare and Sport (VWS),
This information must be up-to-date and reliable, and the diseases that are covered must have a significant impact on people’s lives. Not, for example, a splinter or a tennis arm, but definitely meningitis (spinal) or colon cancer. What should be included and what should not?
The RIVM has made a list in which all diseases have been listed according to the disease burden, which is a measure of health loss in the population. Disease burden is usually expressed in, what one calls, ‘ disability adjusted life Years ‘ (DALY’S). DALY’S are made up of two components:
- The number of years less that people live as a result of the disease (‘ years of life lost ‘; YLL) and
- The number of years that people with the disease will still live, weighted by the quality of life. This component is indicated by the term ‘ years lived with disability ‘; YLD).
Ultimately, this results in a ranking to ‘ seriousness ‘ of a condition.
Skin diseases are not highly noted on list of the RIVM. The highest noted skin condition is contact eczema. This skin condition is at number 33, a lot lower than e.g. neck and back problems (Nr. 8), arthrosis (No. 10), burnout (No. 21) and personality disorders (No. 29).
Misinterpretations and interpretation
Anyone who has a chronic skin disease can look at it in two ways. On the one hand, you may be glad that the skin disease is not perceived as being as severe as other diseases. On the other hand, there is a feeling of denial of the seriousness of the disease, even though you suffer daily from itching or shame. That sense of disregard weighs heavily on most people with skin disease. This also lends itself to two interpretations: the feeling of neglect is not based on reality, and that one has a wrong image of onseself in relation to others. Just as most people believe that they can drive better than the average driver. But those feelings can also be a reaction to the actual situation, and then the neglect becomes part of the burden of the illness itself.
If skin patients rightly feel misunderstood, they should also be able to support their fellings with facts. That is not easy, because then they must be able to argue why the DALY list of the RIVM is not correct. We discussed this with epidemiologist Dr. Loes Hollestein of Erasmus MC who has done a lot of research on the quality of life and DALY’s, . When calculating the DALY’s in the RIVM list, does on take account of how often a skin disease occurs? “Yes, the prevalence of a disease is included in calculating the non-fatal disease burden. So a disease like acne, which is very common, scores for that reason higher than a blister disease that is quite rare. And furthermore, the duration of the disease and the ‘ disability weight ‘ are essential components. “
Apples and Pears
Disability weight? Can you explain that? “The disability weight” is a measure that reflects the impact of the disease with a value between 0 (perfect health) and 1 (deceased). The effects of each disease have a specific weigh. For example, mutilation, pain and itching due to slight psoriasis has weight 0.027, but mutilation, pain and itching due to severe psoriasis has a weight of 0.576. The duration and prevalence of the disease is also included in the calculation of the total disease burden. Therefore, a disease that has a low weight, but which is chronic and/or very common (e.g. contact eczema), can have a similar total disease burden throughout the population as a very serious (short-term) disease that is much rarer (e.g. Melanoma). ” To what extent are apples with pears compared in this calculation? “As described, it is different values with associated weights. So in that respect it is in some sense apples and pears. But what really distorts the result is that many diseases are often collections of different conditions. The RIVM rates all neck and back complaints together, as well as all personality disorders (for example, paranoid, narcissistic or compulsive personality disorder). But why don’t they do that with eczema? If we add contact eczema and constitutional eczema together, then we see eczema rising from place 33 to 24. There are also other forms of eczema.
On the one hand, you may be glad that the skin disease is not perceived to be as severe as other diseases. On the other hand, there is a feeling of a denial of the burden of the disease, because you suffer daily from itching or shame. That sense of disregard dominates most people with skin disease.
And what about skin cancer?
Why is skin cancer rated so low, at number 35? “For cancer in general (diagnosis and treatment) has a high disability weight (0.29), but this weight is not used with basal cell carcinoma (BCC) and squamous cell carcinoma (PCC). They do not get any cancer-coupled weight, but the weight of slight mutilation (0.027). This weight is more than 10 times lower than the weight of the diagnosis of cancer in general. Melanoma, however, has the weight of cancer, but that form of skin cancer occurs much less often than BCC and PCC. In addition, the duration of the disease is also important. For BCC/PCC only the period of diagnosis/treatment is included, but it is known that 40% of all patients get BCC/PCC at least twice, or more. For the group that get BCCS/Pccs multiple times, one could also see BCC/PCC as a chronic disease, with a much longer duration. That would make the score (much) higher. “
Do justice to
Could the low DALY score of skin diseases also affect the chance of obtaining subsidies? That is conceivable and probably depends on the type of subsidy. I did not specifically have to supply the number of DALY’s for a grant application, but I believe that mortality weighs heavily in awarding subsidies. I think that is make a difference for when you describe in your application that approximately 800 people die every year from melanoma in the Netherlands, and that the proposed research can potentially bring down this mortality. This is different than when, as with PCC, ‘ only ‘ 100 people per year die, or even almost 0 in case of BCC. However, many skin diseases are common, causing a large group in the population to suffer, and this frequent occurrence also results in high health care costs. In providing a subsidy, one has to weigh the individual disease burden (e.g. high disease burden through metastatic melanoma) and disease burden for the population (e.g. low disease burden, but many patients with a BCC). ” How could we encourage skin diseases to ‘ count ‘ more? “If one wants to do justice to skin diseases, it is especially important to emphasize the non-fatal disease burden. This can be very high in chronic skin diseases, due to the consequences of the disease, the duration of the disease and the large number of people who suffer from these diseases. This is also evident from the so-called Global Burden of Disease Study: Skin disorders are in the fourth place of all conditions that cause non-fatal disease burden.
“In addition, it would also be necessary to weigh the psychological burden. The current disability weights do not include this. This also leads to an underestimation of the total disease burden in people with a skin disease. ” The final statement: “I understand that skin patients feel misunderstood. There are several reasons to grant skin patients a heavier disease burden. In any case, you achieve that by including all forms of eczema together. “
Thanks to ‘ whole skin ‘ June 2019. An edition of the Dutch Society for Dermatology and Venetirheology. Author Dr. Jannes van Everdingen.
SOURCE Image: https://commons.wikimedia.org/wiki/File:DALY_disability_affected_life_year_infographic.png