Facing arthritis: helping patients to handle their disease and concerns

KEYWORDS:

• Arthritis
• coping strategies
• goal management
• motivational interviewing
• rheumatoid arthritis

Many years have passed since World Health Organization defined health as ‘a state of complete physical, mental and social well-being, and not only as the absence of disease or infirmity’ [1]. This concept transcends the purely physical aspects and includes a state of physiological and mental balance, adaptation to the biological environment and a perspective of sociocultural and family habits and relationships [1]. However, these objectives are difficult to achieve sensu stricto when facing a chronic disabling disease, such as rheumatoid arthritis (RA) and other related autoimmune/inflammatory joint disorders, even in patients in remission when they are in the sequelae phase. In fact, these diseases may affect all aspects of a patient’s physical, psychological and social functioning [2]. Indeed, people with chronic illnesses often need to find a balance between their desires and limitations [3].

An important component of the concept of health is the psychological one. Mental health is currently defined as a state of well-being in which individuals are aware of their own abilities, can face the normal stress of daily life, can work productively and fruitfully, and are able to make a contribution to their community (https://www.who.int/features/factfiles/mental_health/es/). Interestingly, doctors who are accustomed to pay attention to physical ailments, often ignore the social, emotional and quality of life aspects, including sexuality, of patients. All these aspects have been collected in some recent guidelines [4].

A crucial point in the success of any treatment of a chronic process, such as arthritis/RA, is how disease is coped with. At this point, it should be underscored two different and complementary concepts: how to establish strategies for coping with the disease and to define patient’s goals in the management of his/her disease.

Overall, goal management strategies are ways to minimize the perceived disparity between the actual and the preferred situation regarding personal goals, and are applied both consciously and unconsciously. In general, patients with the ‘Broad goal management repertoire’ pattern have the highest level of psychological health as proved by Arends et al. [5]. By contrast, coping strategies are psychological resources to handle a disease in such a way that its impact in the patient is the less negative possible.

We would all agree that receiving a diagnosis of a chronic disease, as it is arthritis in its many forms, is not something we are looking forward to; nevertheless, depending on one’s individual history and coping style, a diagnosis may be a true relief, especially if there are efficient therapeutic options that modify the prognosis of disease.

A chronic disease produces many impacts on patient’s personal life, affecting also their closest relatives. Chronic pain, uncertainty, disability, they all interfere with daily activities, some of which are precious to one’s life, like work, caring for others or social life. Digging into more detail, the fear that expectations of a full life with childbearing and a satisfactory sexual life will not be achieved, or even the deformation of own image, can all be devastating, even in the more prepared people.

In turn, psychological aspects impact on disease outcome. Depression can make the assessment of the disease difficult, mostly leading to overtreatment; concerns or poor coping styles can lead to non-adherence, limiting the effect of therapies, even increasing medication toxicity [6–8].

Psychological aspects are mostly overlooked at the clinical setting. Unless you have well-trained physicians, or include a psychologist in the team – a simple health service modification that can lead to improve outcomes in chronic patients and skills in doctors close to burn-out – most clinicians avoid opening the Pandora box of emotions. Overall, doctors are not properly trained to detect, understand or manage psychological problems during their medical school period – at most a trimester in the first years – not even in effective communication with patients. Many times, the medical consultation seems an attempt of communication between two people who speak in different languages, or rather, who speak but are not really communicating. And even more, let’s not forget the third party in the current clinical scene, the computer; not really an aid in communicating with patients.

To help face arthritis, we need to understand coping styles and how to motivate patients to use styles with the largest expected positive impact. In addition, we must learn the effect and timing of small actions relevant to patients.

There are many coping strategies that can be used, depending on almost infinite factors that may vary from day to day. The Coping Strategies Inventory defined by Cano et al. [9] to face RA include 1) Proactivity, i.e.: action is taken to solve the problem; 2) Self-criticism, i. e.: blaming oneself; 3) Emotional expression, i.e.: expressing own feelings about what is happening; 4) Desiderative thinking, i.e.: imagine better situations; 5) Seek support from a trusted person; 6) Cognitive restructuring, i.e.: trying to see the situation differently; 7) Pretend to ignore the problem; and 8) Social withdrawal, i.e.: avoiding specific people or conflicting situations [10] (Table 1). Among all of them, there are some strategies which may clearly have a positive impact on the experience, symptoms and outcomes of the disease, these being proactivity, emotional expression, and cognitive restructuring [10–12]. However, these ‘positive’ strategies can turn evil if not adequately guided. For instance, instead of focusing on what is being accomplished every day, and not on what is being left out (adequate cognitive restructuring), one can focus on the wrong things, e.g. adverse effects of the medications. So, the first step would be to know what works and what does not work for an individual patient, and then learn to motivate patients in the right direction, tuning motivations and providing advice and best practice examples. For this purpose, asking directly about the coping mechanisms used and apprehending the skills of motivational interview may be very helpful for any good rheumatologist [13].

Table 1. Negative emotional and social situations and coping strategies facing arthritis according to patients and doctors´opinion

The four most negative emotional and social situations when assessing arthritis

i. The patient believes their disease evolves worse than the doctor says ii. The patient doesn´t know aspects of the control/monitoring of their illness iii. The patient feels that he/she does not really participate in decision making iv. The patient is dissatisfied with the overall treatment received

Main coping strategies against arthritis evaluated by patients and doctors

1. Proactivity – act oneself to solve the problem 2. Self-criticism – correct own actions and attitudes 3. Emotional expression – express what it feels like 4. Desiderative thinking – imagine better situations 5. To seek the social support from trusted people 6. Cognitive restructuring – see the situation differently 7. Avoidance the problem – pretend to ignore the problem 8. Social withdrawal – avoid people or specific difficult situations

But doctors have serious concerns about time. There are many things going on in a 10-minute consultation: the administrative burden, the assessment, the difficulties of prescribing according to guidelines but adapting to an individual’s circumstances, and, on top of that, dealing with psychological aspects; all this, pretending to listen and attending to the specific needs of the patient. Perhaps, by focusing in the most important aspects could convince us to include some sort of psychological debriefing as part of our clinical visits. Our team has specifically worked on the situations with largest negative impact in the life of patients with arthritis and how to face them. After some qualitative work (‘nominal group’ of expert patients) the following situations were selected as the most stressful in a clinical consultation: i) feeling that one’s illness is progressing worse than the doctor says; ii) being unaware of aspects of the control and follow-up of one’s disease; iii) feeling that one is not really involved in decision-making; and iv) being dissatisfied with the overall treatment received [10] (Table 1).

Maybe we could only, or as a minimum, focus on detecting these situations and guide patients into the most appropriate coping strategies. How do we detect these situations? As easy as asking the patient in a non-blaming atmosphere, starting with ‘many patients … is that your case?’ If the answer is affirmative, we can then ask the patient ‘how would you propose dealing with this?’ and negotiate possible solutions. When both, people with the disease and rheumatologists, are asked about the best coping strategies for dealing with the four undesirable situations, both choose proactivity and expressing emotions, while for the worst ones, they agree on self-criticism and avoidance of the problem. You can invite the patient to express emotions and to tell what he or she is going to do – thus using the points of motivational interview – and reassure the patient, even before he/she answers, by telling them that their disease is not their fault, that doing nothing does not help and that you will be there by their side. Asking the patient about these matters does not take as much time as one may imagine, and offering help is not as overwhelming as one would expect; in turn, both simple messages, if honestly expressed, will increase the patient’s confidence in our care and improve their adherence and self-management [14].

Finally, it is interesting to remark that some gender differences have been detected in coping strategies chosen by people with RA. In general, men prefer tailored strategies, based more on expanding their knowledge, while women prefer more participative strategies based on the experience of other groups with similar pathologies [15].

In summary, when facing arthritis, it is important to define the main goals of disease management as well as how to cope with the disease. If we want to change the course of the disease, patients need our emotional support, not only our medicines. Either we learn how to deal with psychological aspects or we include the help of a specific professional in the team. Anything but ignoring the package of emotions that adequately tailored to actions, can help cope with a devastating disease as arthritis.

Declaration of interest

S Castañeda has received trip aids for congresses and grants from Abbvie, Amgen, BMS, LILLY, MSD, Novartis, Pfizer, Roche, and UCB. Advisory Board consultation fees from Amgen, LILLY, MSD, Pfizer, Roche, and Sanofi. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Acknowledgments

We thank all the doctors and patients belonging to the Spanish Patients’ Forum and to Conartritis who have participated voluntarily in the surveys of the OpinAR and AfrontAR projects. We thank also to Bristol Myers Squibb, Spain, which funded both OpinAR and AfrontAR studies.

Additional information

Funding

Bristol, Myers, Squibb (SPAIN) supported partially the OpinAR and AfrontAR studies with patients.