How do RA patients gauge success of treatment?

[Guest guest]

Nov 12, 2002

How do RA patients gauge success of treatment?

New Orleans, LA - Understanding how patients with rheumatoid arthritis (RA)

gauge the success of therapy and what treatment outcomes they themselves

consider to be important may help health professionals in their assessment

of the results of a therapeutic intervention. " Only with this understanding

will we be able to develop outcome measures that have maximum impact and

biological relevance and are also relevant to the patient, " says Dr Rod

(St 's Hospital, Chertsey, UK).

Reporting findings from studies based on detailed interviews with RA

patients at the recent American College of Rheumatology meeting,

noted that patients' perception of success for a certain treatment changes

with time and with disease duration. Also, certain treatment outcomes that

are considered to be very important by patientsfor instance, well-being and

fatigueare not currently measured in assessments of treatment efficacy, and

" our understanding of these outcomes and how to measure them are

rudimentary, " he said.

What's important for the patient?

and colleagues outlined the findings of 2 qualitative studies based

on patient interviews [1,2]. Both involved 39 patients with RA attending

hospitals in 5 UK cities in varying socioeconomic areas (Chertsey, Bristol,

London, Nottingham, and Stoke).

The first study posed the question: " How do you decide that a treatment is

working? " There was a strong concordance across all of the groups,

reported, with 4 central themes emerging:

* Symptom reductionAll patients considered a reduction in pain and an

improvement in function and mobility to be important. " I know my treatment

is working when I can just breeze through cleaning my teeth and getting

dressed and can walk down to breakfast and get on with my life, " said 1

patient. Another mentioned shorter flares " if it lasts only a short time,

that is how I define that things are working. "

* " Forgetting you have RA " A composite of the return of well-being,

energy, function, and a sense of " normality. " Successful treatment reduces

symptoms sufficiently for patients to forget, albeit temporarily, that they

have RA. One patient explained that this means more than just being pain

free and with good mobility, it also means " not sort of feeling ill in any

other way. " Another said: " Occasionally in shops, I've left my walking stick

on the counter and have walked out, so I know it's working then. "

* Changes in priorities with timeThe definition of a successful treatment

changes over time with progression of the disease; early on in the disease,

pain reduction is the main factor for success, but later on a certain amount

of pain was considered tolerable if there were improved function.

* Magnitude of improvementPatients were concerned by what they should

consider to be a minimally clinically important (or noticeable) difference

(MCID). This also appeared to change with time, both as a result of the

variability of the disease (RA flares) and chronologicallywith later

disease, the change needed to be larger to be considered a success. One

patient expressed it as follows: " It's very hard to gauge how severe the

inflammation is because it's so erratic from day to day. Because you appear

to be have good days and bad days, a treatment may appear to be working

because you're experiencing a good day. " Another commented: " I think maybe

as the arthritis progresses, and sadly it gets worse for a lot of people, it

may be that you don't recognize the small changes so much and you don't

think they are as important . . . I mean, you get used to putting up

generally with aches and pains, you know. "

In summarizing the findings, emphasized that the definition of MCID

and the changing perception of success for a certain treatment with time and

disease duration " are clearly of importance to the patient and should

therefore be of importance to the clinician. "

Differentiating between tiredness and fatigue

The second study asked: " What treatment outcomes are important to you? "

Again, noted, several themes emerged from the patients' answers:

* PhysicalPain reduction, limited disability, no deformity.

* Relative importance of outcomes changes with time and under different

circumstancesPatients were willing to trade a certain level of adverse

events for therapeutic benefit, but the willingness to accept this balance

changes over time. For example, pain control was considered to be the most

important outcome within the first 3 years of diagnosis. As 1 patient put

it: " We all start at the beginning wanting pain to be eased a bit, but then

you get used to it . . . then your mobility goes, and you want to get on and

improve that. "

* General well-beingThis was considered to be very important by patients,

even though they struggled to define it clearly, commented. Fatigue

was consistently mentioned as an important outcome, and patients also spoke

of " not feeling ill. " Patients distinguished between normal tiredness and

the complete systemic fatigue related to arthritis. " You can sleep all night

and you get up on a Saturday morning and just feel so tirednot many people

understand that, " 1 patient commented. Another said that what she wanted

from a treatment was for the drug to " sort of compensate for the tiredness. "

* Independence and " fear of the future " Patients spoke of seeking a

reduction in the emotional impact of RA and expressed fear of losing their

independence in the futureof losing their jobs, ending up in a wheelchair,

etc.

Some of the outcomes cited as important by patients are well validated, but

others are not taken into consideration in current measures of therapeutic

efficacy, commented. " Our challenge is how to calibrate new and

existing measures to take account of these outcomes and of the varying

weighting of importance given to different outcomes at different times. "

commented to rheumawire that a third abstract on a similar theme had

been submitted to the ACR meeting but had not been accepted. The third study

asked RA patients the question: " What makes you satisfied or dissatisfied

with treatment? " In addition to mentioning drug side effects and

difficulties in gaining access to healthcare, patients said they were

dissatisfied with current strategies for trying out different drug

treatments. The common ploy of trying out 1 drug and then another and yet

another appears to concern patients, and they say it makes them lose

confidence in the doctor, commented. " Patients don't seem to like

this hopping from 1 drug to another in an apparent random manner, and

patients perceive that not to be logical, " he said.

Zosia Chustecka

Sources

1. RA, Hewlett S, Carr A et al. How do patients with rheumatoid

arthritis decide that a treatment is working? American College of

Rheumatology meeting [abstract 859]. 2002. Available at:

http://www.rheumatology.org.

2. RA, Hewlett S, Carr A et al. Patients priorities for outcomes in

rheumatoid arthritis. American College of Rheumatology meeting [abstract

860]. 2002. Available at: http://www.rheumatology.org.