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Treat me like a woman: a mixed studies review into treatment burden to develop gender sensitive rheumatic care.

Heijmans, M., Menting, J., Merode, T. van, Boeije, H. Treat me like a woman: a mixed studies review into treatment burden to develop gender sensitive rheumatic care. Utrecht: Nivel, 2019.
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Men and women differ markedly in the frequency and clinical presentation of rheumatic and other autoimmune diseases. This is especially true for Reumatoid Arthritis (RA) that happens three times more in women than in men. Except for differences in prevalence, there are also sex differences in the course and prognosis of RA and how RA impacts on the daily life of patients. Many observational studies have suggested that, on a whole, women with RA do worse than men, reporting an earlier progression, worse functional outcomes and quality of life. These sex differences in clinical manifestation and outcomes in RA are not well understood and until now treatment recommendations for RA hardly take account of these differences between men and women.

Why was this study done?
This study was done to get a better understanding of the differences reported in literature in the clinical presentation and outcomes between men and women with RA or other forms of inflammatory rheumatic diseases like Ankylosing Spondylitis (AS) and Arthritis Psoriatica (AP). In trying to understand these sex differences, we focused on a relatively new and innovative concept in care and research: treatment burden (TB). The term TB describes the self-care practices that patients with rheumatic and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Where self-management is related to coping with the illness in every aspect of daily life, TB is restricted to the tasks resulting from medical advise and treatment. Treatment in RA, AS or AP is a lengthy process that requires considerable personal investment from the patient. Unfortunately, TB can overwhelm patients. They may be unable to cope with the multiple advices and demands placed on them by health care providers, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help to optimize movement of their limbs, experience side effects of medication or find it hard to inject medications. TB has been poorly examined in relation to the treatment of rheumatic disease.

What did we do?
In this study, the TB in RA, AS, AP was studied by undertaking a mixed studies review of the literature describing the patient experience of inflammatory rheumatic disease management. The review consisted of both qualitative and quantitative studies. Qualitative studies collect mostly textual data. For example, a qualitative study into RA treatment with biologicals might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving biologicals. Our first aim was to describe the concept of TB in rheumatic diseases in detail. Our second aim was to explore wheter TB differs for men and women and if so, whether these differences could be an explanation for the reported differences between men and women in clinical presentation and outcome.

What did we find?
This study revealed a comprehensive picture of TB as experienced by patients with inflammatory arthritis. We found six main components of TB: dealing with physical discomfort and concerns about medication, technical aspects such as performing exercises and lifestyle adaptations in a good way, challenges in contact with care providers and care institutions, time investment for treatment and contacts with care, problems with maintaining or fulfilling roles as parent or employee and, most prominent, understanding of illness, the treatment and the advice that goes with it. Our literature review also provided insight into factors that influence the level of TB experienced (antecedents) and factors that result from TB (consequences). The antecedents could be divided in patient characteristics, disease characteristics, treatment characteristics, aspects of the patient-provider relationship, information provision, personal beliefs and concerns of patients and the social context in which patients live. Five broad categories of consequences of TB were found: adherence, quality of life, health care use and costs, workability, and social roles and identity. Taking into account these antecedents, consequences and attributes we were able to define a conceptual model of TB in rheumatic disease.
In a next step we looked for sex differences in TB and its antecedents and consequences. In only 25 of the 99 included studies (25%) explicit attention was paid to differences between men and women in the TB experienced. In almost all studies, only a (biological) distinction was made between men and women and no gender roles were considered. In two of the 25 studies no differences were found in experienced TB between men and women. In the other 23 studies more negative effects were found for women: women had more pain and more complaints, more frequent and more serious side effects of medication, spent more time on treatment and were less able to combine treatment with paid work than men. The preferences regarding information and decision-making also differed between men and women: women needed more information and wanted a more active role in the treatment than men. Women were themselves more active in their treatment and also better informed but this was less encouraged by health care professionals. For both men and women, the rheumatic disease had an impact on their identity as man or woman.

What do these findings mean?
Patients with RA, AS or AP experience TB coming from side effects of medication, adverse events or concerns about medication use. We also found that TB can be a result of interactions with health care professionals. Poor health professional–patient relationships and a lack of adequate information regarding treatment were associated with high levels of TB.
Health care professionals need to develop a relationship that is sensitive to patient’s preferences with regard to treatment choices, their own role in treatment, selfcare and information provision. This type of relationship will enable patients to become more actively involved in decision making and integrate treatment with their daily lives, ultimately improving adherence and treatment outcomes and diminish TB.
As women and men differ in the amount of TB experienced and these differences have their impact on outcomes, it is important to take sex differences into account when providing care to people with rheumatic diseases. The differences between men and women in TB identified in this review have clear implications for health care professionals to alleviate the burden of treatment for both sexes. As the perception of TB is highly subjective and determined by a number of antecedents that also differ for men and women, strategies to alleviate its impact need to be individualized, reflecting the circumstances and preferences of men and women seperately. (aut. ref.)