Health-Related Quality of Life

Health-related quality of life in patients with common rheumatic
diseases referred to a university clinic.

Rheumatol Int. 2008 Aug 6. [Epub ahead of print]

Laas K, Roine R, Räsänen P, Sintonen H, Leirisalo-Repo M; HUS QoL Study
Group.

Division of Rheumatology, Department of Medicine, Helsinki University
Central Hospital, Kasarmikatu 11-13, HUS, P. O. Box 263, 00029,
Helsinki, Finland, <karin.laas@helsinki.fi>.

PMID: 18682951


The aim of the present study was to assess the health-related quality
of life (HRQoL) in patients with common rheumatic diseases referred
to a rheumatology clinic and to compare it to the HRQoL of the
general population.

All patients with a new referral to the Department of Rheumatology of
the Helsinki University Central Hospital were asked to participate in
the study during the period from May 2002 to April 2003. A total of
295 patients with various rheumatic diseases were included in the
analysis: 99 patients with rheumatoid arthritis (RA), 47 with
arthralgia and fibromyalgia, 43 with other chronic arthritis
(spondyloarthritis, psoriatic arthritis, enteropathic arthritis), 44
with osteoarthritis (OA), 22 with active reactive arthritis (ReA), 17
with systemic rheumatic diseases, 9 adults with juvenile idiopathic
arthritis (JIA) and 14 with other diagnoses. HRQoL was measured by a
disease specific instrument, the Stanford health assessment
questionnaire (HAQ) and by a generic instrument, 15D.

The mean baseline 15D score of the 295 included patients (0.822, SD
0.114) was significantly lower than of the general population (0.903,
SD 0.098). Patients with OA and chronic arthritis reported the
poorest HRQoL scores (both 0.810 on a 0-1 scale). In patients with RA
and ReA the 15D score improved in a statistically significant and
clinically important manner during the 8-month follow-up. Discomfort
and symptoms caused by the disease were alleviated in a statistically
significant manner in patients with RA as well as in those with
arthralgia and fibromyalgia, chronic arthritis, ReA and systemic
rheumatic diseases. HAQ score improved significantly in patients with
RA, arthralgia and fibromyalgia, and ReA.

The HRQoL of patients with common rheumatic diseases at referral to
rheumatology clinic is significantly lower than the HRQoL of
age-standardized general population. The most affected patients are
those with OA, chronic arthritis and RA. A significant improvement in
HRQoL with conventional interventions was achieved in patients with RA and
ReA.

* * *

This is often a major problem with invisible illnesses: the lack of quality of life.  Constant pain or constant exhaustion that prevents doing anything "fun".  Quite often, you get so wrapped up in the things you MUST do (job, housework) that you have no energy left for anything that would give you some quality of life.

A friend who had lived for years in the cycle of going to work and going home to bed was finally fired for inability to keep up at work, and a few weeks later e-mailed me about her new-found quality of life.

I had found the same thing.  After years of viewing weekends as my chance to rest up enough to make it through the next week at work, and three-day weekends as an opportunity to get a little extra boost of rest to carry me through to the next holiday, I could suddenly go places and do things that I hadn't before, because I no longer had to worry about how I was going to get through the workweek if I exhausted myself by doing something on the weekend. 

I re-discovered the joy in life because I was doing pleasurable things, not just work/clean/rest.  If going out for a movie or a trip to the ethnic deli on the other side of town exhausted me, I could spend the next few days resting, instead of forcing myself to go to work, getting more exhausted and potentially triggering a relapse.

The misconception is that people with CFS "can do whatever they like, except work".  The fact is, that I can do enjoyable things only if I reschedule my life to accommodate them, in ways that I could not reschedule a job.  

At times, a simple trip to the grocery store (which no one would consider a frivolous expenditure of energy!) required 3 days of rest before and 3 days of rest afterward ... it was the only thing that I did all week.  Without a job to worry about, I could devote a whole week to grocery shopping or a whole week to a one-hour concert; if I'd still had a job, I would not have gone to the concert because I needed every ounce of energy to work. 

In the last few weeks that I was working full-time, I did not cook, I did not clean, I did not do laundry; when I got home from work I was too exhausted even to make it all the way to the bedroom and collapsed on the couch instead, and spent the entire weekend in bed trying to recuperate from a week at work.  Fortunately, I lost my job before I ran out of clean underwear, and since I was not cooking, there was no need to go to the grocery.

That's not quality of life.  That's not even "life".  It's living death.

Empathy and caring have tremendous capacity
       to facilitate healing in a patient with an illness for
       which there is no cure."
                                         --Stuart Dreschler