Обмеження активності у пацієнтів із синдромом хронічної втоми – складання специфічних анкет хвороби

26Use screwdriver2, 1111, 51142, 555, 4

27Hammer a nail2, 1751, 46635, 253, 2

28Put groceries away2, 2171, 39734, 356, 4

29Make one bed2, 2241, 43435, 755, 0

30Use washing machine2, 2371, 43633, 154, 0

31Return dishes to cupboard2, 2841, 39434, 755, 1

32Crawl2, 3051, 29929, 152, 5

33Write full page letter2, 3171, 26824, 352, 1

34Remove wet clothes2, 4201, 39530, 950, 4

 

In question 2 of the KPS questionnaire, patients were asked if they were able to carry on normal activity. One hundred and twenty-four (88%) patients reported not to be able to do so. In addition, they were asked to list three activities they could not perform. The thirteen most frequently reported activities (corresponding to the activities with a minimum score of 10. 0) are listed in Table 3.

 

TABLE 3.

Most Frequently Reported Activities in KPS Question 2.

NumberActivity limitations and participation restrictionScore*

1Work52, 3

2Sports39, 0

3Housekeeping28, 0

4Cleaning22, 0

5Walking22, 0

6Shopping14, 0

7Reading13, 0

8Physical work11, 3

9Social activities11, 0

10School or work11, 0

11Concentrating10, 3

12Studying10, 3

13Driving a car10, 0

 

The high score accompanying «Housekeeping» validates the selection of «Washing dishes and, returning them to cupboard, « «Iron, « «Do the wash, « «Gardening» and «Make one bed» (see Table 4), which are all household activities. The relevance of «Cleaning, « «Shopping» and «Walking» as difficult tasks for Chronic Fatigue Syndrome patients was endorsed as well as by means of the KPS question 2 results, as they each were reported by a great deal of patients. «Physical work» was not selected because it encompasses a much too wide activity spectrum, for instance gardening and carrying heavy objects (activities which we have already selected). Therefore, KPS question 2 resulted in seven additional activity limitations and participation difficulties; «Work, « «Sports, « «Reading, « «Social activities, « «School, « «Studying» and «Driving a car. « Because participating in working activities and scholar activities are only rarely combined, these two items were combined into one question (see Appendix I for the questionnaire).

 

TABLE 4

Most Frequently Reported Activities in KPS Question 4

NumberActivity limitations and participation restrictionScore*

1Preparing meals37, 7

2Shopping27, 7

3Housekeeping26, 3

4Cleaning25, 3

5Have a wash20, 7

6Taking care for a child11, 7

7Driving a car10, 7

* Each patient reporting a certain activity represents a score of 1. Because some patients filled in the questionnaires three times at baseline, some data contain decimals.

Question 3 of the KPS questionnaire highlights four additional activities (laundry, vacuuming, yard maintenance and grocery shopping), in which each patient has to indicate if he/she is able to perform the activities without help from anyone else. All four activities are already encompassed by our item selection. Nevertheless, these results validate our selection. Indeed, only 73 (51. 7%) subjects were able to do the laundry independently. Less than 30% (N = 40) were able to vacuum, while 58 of all patients (41. 1%) were able to shop autonomously. Finally, more than eight out of ten (116 subjects; 82. 3%) subjects cannot «keep one's garden. «

In question 4, 66 patients (46. 8%) reported not to be able to care completely for themselves on a regular basis without any help. In addition, patients were asked to list three activities they need assistance with. Table 4 presents the most frequently reported activities (items had to present with a minimum score of 10. 0). It should be noted that the item-scores are remarkably lower compared to those in question 2. This is due to the smaller amount (66 versus 124 in question 2) of patients actually responding to the second part of the question. High scores for «Shopping, « «Cleaning» and «Housekeeping» substantiate our former selection. «Preparing meals» and «Caring for a child» were added to the selection, while «Have a wash» was rejected because of a very low score on the ADL-questionnaire.

This selection-procedure resulted in a selection of 25 items (listed in Table 5), which were transformed into a questionnaire. Therefore, a statement was constructed for each item (for instance, «Due to my symptoms, I am no longer able to clean») (see Appendix I for the Dutch questions, and Appendix II for an English translation of the questionnaire). The scoring-system of the Quality of Life Index (10-12), which acknowledges that people value things differently, was used. Items are rated on a four-point Likert-type scale, ranging from «totally disagree» (= 1) to «totally agree» (= 4) for the satisfaction part and «very unimportant» (=