Well-being

"Psychological well-being is about lives going well. It is the combination of feeling good and functioning effectively. Sustainable well-being does not require individuals to feel good all the time; the experience of painful emotions (e.g. disappointment, failure, grief) is a normal part of life, and being able to manage these negative or painful emotions is essential for long-term well-being. Psychological well-being is, however, compromised when negative emotions are extreme or very long-lasting and interfere with a person's ability to function in his or her daily life" [1]

Whilst the above quote focuses upon our psychological well-being, it acknowledges that feeling good and functioning effectively also involves our physical well- being. It is a combination of both physical and mental well-being that allows us to cope most effectively when things do go awry in life. When our physical health is compromised with a chronic health condition like lupus, it is not uncommon to experience periods of low mood and/or anxiety. Similarly compromised psychological well-being can directly impact upon physical health, often disrupting sleep and exacerbating symptoms like pain and fatigue and compromising treatment effectiveness.

Is there a problem?

Current NICE guidance suggests that healthcare professionals should be alert to the possibility of an individual experiencing low mood and/or anxiety, particularly when an individual has a chronic health condition with associated functional impairment. Past history of low mood, formally diagnosed as a depressive episode, should also be taken into account during a consultation [2,3]. A recent systematic review and meta analysis suggests that depression and anxiety may be highly prevalent in adults with SLE. Prevalence estimates for depression ranged from 24-39% and 37-40% for anxiety [4].
Factors such as recent diagnosis or alterations in body-image where there is cutaneous involvement, alopecia, and weight gain due to steroid use, can also be associated with depression and anxiety [5, 6]. In adolescents (10-19 years) and young adults (potentially 15-24 years) special consideration may be required when such issues may present particular problems and difficulties integrating with peer groups can arise [7]. For many individuals, experiencing low mood or feeling anxious may be fairly short-lived and mild in nature and may not ever be disclosed to a health professional if existing coping strategies are effective. However, it can be useful to include an assessment of psychological well-being into any on-going treatment plans to recognise signs and symptoms early, in order to determine appropriate treatment options.

Diagnosis

Increasingly, patients are open to keeping personal records or 'diaries' that track daily or weekly symptoms including mood and/or anxiety states, and there are electronic applications for personal computers and phones that can facilitate this. Whilst these may only give an indication of whether psychological well being needs to be explored further (as they may not be based upon current accepted diagnostic criteria), they can also be useful in tracking improvements in mood and anxiety states once treatment(s) commence. Tracking outcomes in this way may enhance concordance between clinician and patient treatment outcome goals, as it can be difficult to remember the qualitative difference in mood states; can you remember how you felt on the first Wednesday of last month? No, me neither.

Depression

The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM V) provides guidelines that enable a formal diagnosis of a depressive disorder and the likely degree to which an individual is experiencing symptoms. It is worth noting that 'sub-threshold' symptoms may still be distressing for individuals and require management [2,3,8]. If a patient expresses feeling ‘down’, ‘miserable’, ‘low’ or ‘depressed’, ask the following questions:
• During the last month, have you often been bothered by feeling down, depressed or hopeless?
• During the last month, have you often been bothered by having little interest or pleasure in doing things? Additionally, these feelings should be persistent in that they are experienced everyday, for most of the day, for at least two weeks. At least five other symptoms should also be present, and mark a notable change to usual functioning:
• Significant weight loss or gain or significant change in appetite
• Hypersomnia or Insomnia nearly every day
• Noticeable (by others) slowing down or agitation
• Fatigue every day
• Feeling worthless or feeling excessively or inappropriately guilty
• Inability to concentrate or being indecisive
• Thoughts of death; suicidal ideation with or without attempt or plan Clinicians may be familiar with the World Health Organisations (WHO) International Classification of Diseases (ICD). Version 10 remains current although Version 11 was released May 2019 and will come into effect 1st January 2022. Under section V 'Mental and Behavioural Disorders', the Mood (Affective) Disorders (mainly section F32 - F32.2 here) also allow a determination of the symptoms of low mood state and the degree to which an individual might be affected. It is worth noting the threshold criteria are different to DSM V. For example, mild depressive state defined as two or three of the stated symptoms being 'usually' present, with the individual distressed by these, but will probably be able to continue with most activities.
See - http://apps.who.int/classifications/icd10/browse/2016/en#/F30-F39
It is, of course, important to establish where similar symptoms might reasonably be expected due to the nature of SLE or its treatment effects, or where external events might predict the onset of an acute period of stress and low mood such as bereavement.
For an assessment of depression alone, the nine item Patient Health Questionnaire (PHQ-9) is a useful self administered scale, based upon earlier DSM (IV) criteria. Scores indicate presence and level of severity of a depressive disorder and there are suggestions for appropriate action within the literature. A short impact scale additionally available can indicate the degree to which symptoms are bothering the individual [9].
Other measurement scales might be useful in assisting the clinical interview. The Hospital Anxiety and Depression scale (HADS), is a 14 item questionnaire that measures both anxiety and depressive symptoms, with seven alternating items. It is not a diagnostic tool, and misses elements of the DSM criteria, but can be easily completed by most people with a reasonable level of literacy. Alternatively, the questions can be worked into the clinical interview to assess whether the individual also seems to be experiencing anxiety. Items that indicate difficulty can be explored verbally to get a fuller picture of the situation. There are 'cut-off' thresholds broadly corresponding to 'mild' (8-10), 'moderate' (11-14) and 'severe' (15-21) difficulty. For both scales, a score of seven or under indicates non-cases [10,11].

Anxiety

Again, it is not uncommon for individuals to experience periods of anxiety, particularly when they experience a 'flare' of symptoms or are faced with new medications or a change in existing medications. Fears around needles and injections can arise due to frequent blood testing and treatments involving needles. Promoting relaxation practices and distraction techniques and enabling swift blood monitoring (perhaps with a trusted clinician or nurse at the GP practice) by arranging set appointment times so that the patient does not have to wait and worry, can be very beneficial in managing these anxieties.
One useful distraction technique we have tried is to ask the patient to read aloud during a blood test to the clinician. This occupies the brain in two cognitive processes - reading and talking - and helps to distract attention away from the procedure. Where the individual is unable to engage with treatment options due to anxiety, further assessment and treatment may be required with the assistance of psychological talking therapies. Some individuals may develop a more generalised health anxiety, precipitated or exacerbated by the onset of SLE, and may be linked to healthcare experiences in the past. This will need a formal diagnosis and treatment plan.
Generalised anxiety disorder (GAD) where the anxiety is more 'free-flowing' has some similar features to depression. Where an individual has excessive anxiety and worry, occurring more days than not for at least 6 months, about a number of events or activities and the individual finds it difficult to control the worry, further exploration is required. If the anxiety and worry are associated with three (or more) of the following six symptoms (with at least some symptoms having been present for more days than not for the past 6 months) then a diagnosis of GAD may be appropriate:
• Restlessness, feeling on edge
• Experiencing fatigue easily
• Difficulty concentrating
• Irritability
• Muscle tension
• Sleep disruptions (difficulty falling or staying asleep, or restless, unsatisfying sleep)
As with depression, care has to be take to disentangle what might be expected from the physical effects of lupus (all of which could be experienced from the list above), what might indicate low mood (with similar cautions), and what might be due to treatment effects.
Where a diagnosis of GAD is appropriate, stepped care plans are outlined within NICE Guidance CG113. The use of an assessment measure such as the Generalised Anxiety Disorder scale (GAD 7) can indicate both presence and severity to facilitate treatment planning [12].

Psychological support

Where appropriate, GPs will have clear routes and guidelines for suggesting support from psychological services. The local rheumatology department may additionally have access to psychological support provision, possibly via a clinical or health psychologist. In the United Kingdom, a Health Psychologist is a Chartered Practitioner Psychologist, registered with the HSCPC and specialises in the psychology of physical health, having completed undergraduate; master's and doctoral degrees. Mindfulness-based stress and relaxation programmes can be useful in targeting specific areas for self-management. As estimates suggest, 20% of rheumatology patients attending local rheumatology services may additionally have a diagnosis of Fibromyalgia, it may be useful to investigate local provision of pain management courses [6]. Web based support can be extremely effective, particularly for individuals who feel they would not enjoy or cope with a group based education programme. The Pain Toolkit is one such resource (see See- h www.paintoolkit.org) and contains videos and other materials. Many of the principles can be extrapolated beyond just managing pain and are appropriate for managing disturbed sleep; relaxation; pacing activities and so on. For those who would prefer to source their own one-to one psychological support, it is important that a registered and accredited therapist is used. The British Psychological Society website (www.bps.org) hosts a platform that enables individuals to search for a therapist either in a specific perspective (i.e. Jungian; CBT; Humanistic; Person Centred etc) or within a local area. Many therapists accept GP referrals, and/or operate a sliding scale of costs for those who wish to pay either directly or via private health insurance. The British Association for Counselling and Psychotherapy (BACP) host a similar resource.

Summary

It is not uncommon for people with a diagnosis of SLE to experience a period of depression and/or anxiety. Recent literature suggests that people with all musculoskeletal conditions particularly value health professionals who combine good listening and communication skills, and who attempt to understand the challenges faced in living with such conditions. Being alert to the potential for mood disorders such as depression and anxiety, and offering treatments agreed with the individual, can only enhance these relationships and maximise current and future treatment outcomes.