Distress often experienced in patients with psoriatic arthritis

[Fred]

This albeit small study looked at distress in patients with psoriatic arthritis and suggests, patients reported their condition is being dismissed or belittled by others and they therefore hide their distress from people around them.  

Quote:

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Objective:
PsA is associated with significant distress and can be life-ruining. Reducing distress can improve quality of life and disease outcomes. Quality of life measures broadly identify the extent to which PsA impacts on people’s lives but do not enable clinicians to address PsA-specific distress in the setting of the clinic. The aim of this study was to explore people's illness beliefs, emotions and behaviours that relate to living with PsA and account for the distress experienced by those living with this condition.

Methods:
Semi-structured individual interviews were conducted in the UK with adults with PsA. Interview questions were theoretically informed by the Common-Sense Self-Regulation Model (CS-SRM). Two stages of data analysis, in line with thematic and framework analysis principles, involved coding pre-determined CS-SRM components and identifying any additional emergent themes. Constant comparison techniques allowed for patterns across CS-SRM components to emerge inductively from the data.

Results:
Twenty-four people with PsA participated (54% male; aged 27–71; time since onset ranged between 4 months and 29 years). Four core themes comprising clusters of illness beliefs, emotions and related behaviours emerged accounting for patient distress: restrictions, role of others, resentment and resignation. Suicidal ideation in the sample was commonly expressed and patients feared exponential degeneration of their condition. Patients reported the condition being dismissed or belittled by others and therefore hiding their distress from people around them.

Conclusion:
People with PsA experience significant disease-related distress, including suicidal ideation. Misperceptions, ineffective coping styles (e.g. avoidance/blocking) and negative emotions should be actively identified and addressed with people with PsA.

Source: oxfordjournals.org


Manchester Centre for Dermatology Research
Manchester Centre for Health Psychology
National Institute of Health Research Manchester Musculoskeletal Biomedical Research Unit
Central Manchester University Hospitals NHS Trust, University of Manchester
The Dermatology Centre, Salford Royal NHS Foundation Trust
Manchester Academic Health Sciences Centre, Manchester, UK

[JohnB]

This probably isn't going to sound right but

Why on earth do/did we need a study to highlight the bleeding obvious. I know we still have some in the general medical profession who think P/PsA is a minor inconvenience and dismiss it out of hand. 
It is not surprising sufferers have misconceptions and associated fears about their disease. I would hazard a guess most patients have never been given satisfactory information about their disease (I now know I knew very little about P before I joined this forum and I considered myself fairly well informed). Its only human nature to look on the bad side of things and it is very easy to fall into that cone of dispare when you are in pain or sever discomfort. It is also true of hiding an illness and developing coping strategies. Its what we do.

I think what I am trying to say this should be obvious to the medics and a better education of the sufferers and the general population would reap benefits.

[D Foster]

The NHS is populated with people who don't give S**t about it at all, there are many idiots that if you employed them you would sack them. All a lot of them are interested in is ,does my data add up to the right number to prove that I have turned in so I can get paid and does the numbers add up to what the government require if not we will make them up to fit.
Unfortunately these are in the majority and the good ones who do care are outnumbered by many who don't care.

Dave, with a lot of personal experience to draw on .

[Fred]

This probably isn't going to sound right but

Why on earth do/did we need a study to highlight the bleeding obvious.

Well one could say that any study that keeps psoriasis in the limelight is good news.

As people with the problem, we know what it feels like but if it helps educate those treating us then I'm all for it.  

We all need to learn and we all need teaching, the hospital I use is a training hospital and by my own experience I would say 90% of those in training will be reading this sort of stuff. Those are the people that will be treating us in the future.