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0 indicates death. Total scores however, were not used for analysis either, because we were only interested in individual items. The KPS originates from, and is used mainly for oncology research (2-4), where it appears to be a validated measure. Sufficient construct validity was found in HIV-infected patients (5). Sharpe and colleagues reported good inter-observer reliability in patients with Chronic Fatigue Syndrome (72). Additionally, the KPS was able to detect clinical improvement of cognitive behaviour therapy in CFS patients (72), suggesting sufficient responsiveness as well.
TABLE 1
Demographic Features of Our Sample (all fulfilling the 1994 CDC case definition for Chronic Fatigue Syndrome1).
Number of patientsNumber of malesNumber of femalesMean age (years) SDRange
14134 (24%) 107 (76%) 32. 310. 2 (16-65)
The Barthel ADL index is a reliable questionnaire (6-7). However, we used a Dutch version of the Barthel Index, modified for CFS. To our knowledge, no reliability or validity data on this modified version are available. This self-ad-ministrated questionnaire consists of 83 activities of daily living, categorised into 13 subdivisions (grooming, bathing, toileting, dressing, meal preparation, cleaning, laundry, yard work/maintenance, transportation, mobility/activity, home management, physical manipulations and communication). Only individual item-scores were analysed, and no attention was paid to subgroup-scores (subgroup categorising was judged unsuitable). Likert scores range from 0 to 4; «0» meaning the patient is not capable of performing the activity, while a maximum score implicates a patient does not require assistance to perform the activity. Total score range from 0 to 332. The higher the score, the less assistance is required.
Data Analysis
Data were collected using Microsoft Excel™ 98. 0, and transmitted to Stat View® 4. 0 (1992 MindVision Software © Abacus Concepts, Inc.) for statistical analysis. We used descriptive statistics (mean scores, standard deviations, and frequency distributions). A frequency histogram was constructed for each item.
ADL-items were ranked according their mean score. However, each item had to fulfil two criteria to be included for additional analysis:
Mean score < 2. 5
Frequency distribution (FD) < 3: minimum 50%, meaning at least 50% of our sample was not able to perform the activity independently all the time.
Included items were adjusted and supplemented with the results of the KPS-questionnaire (see below for a detailed description of the data analysis). To reduce the amount of items, we combined similar activities.
RESULTS
Questionnaires
Analysis of the ADL-data, using the selection criteria explored above, revealed 34 tasks for CFS-patients, which were reported as difficult (Table 2). Items numbers 1 to 7 all belong to the same subdivision of the ADL-question-naire («Cleaning»). Therefore, these 7 activities are reduced to one («Cleaning»). Items numbers 8 and 31 were combined into «Washing dishes and returning them to cupboard. « Numbers 9, 10, 30 and 34 («Carry full laundry basket, « «Iron, « «Use washing machine» and «Remove wet clothes») were reduced to two different activities: «Iron» and «Do the wash. « «Gardening» represents 4 items (11-14) of the same subdivision («Yard work»). «Run a block» and «Walk a block» were combined into «Walking. « «Doing groceries» represents four activities (numbers 20, 21, 23 and 28). «Dispose of garbage, « «Carry one grocery bag» and «Carry full laundry basket» have one thing in common; they all implicate «Carrying heavy objects. « «Crawl» was excluded for definite item selection. Indeed, we focus on patients older than 18 years of age. All other activities were left unaffected.
TABLE 2.
Descriptive Statistics of All Selected Items (ADL-questionnaire) (mean score < 2. 5; frequency distribution [FD] < 3: minimum 50%).
No. ActivityMean valueStandard deviationFrequency distribution <2 (%) Frequency distribution < 3 (%)
1Dust/mop1, 7941, 43549, 367, 9
2Sweep with broom1, 9001, 42045, 764, 3
3Vacuum one room1, 7671, 43149, 365, 7
4Clean bath tub1, 5401, 42156, 170, 5
5Wax floors1, 2021, 41366, 480, 0
6Wash windows1, 0991, 36570, 580, 6
7Cleaning oven/range1, 3601, 46066, 274, 8
8Wash dishes1, 9861, 41042, 563, 8
9Carry full laundry basket1, 7591, 38749, 670, 5
10Iron1, 9541, 47444, 661, 2
11Mow lawn1, 2211, 44966, 776, 1
12Rake0, 9511, 32974, 183, 5
13Shovel0, 8841, 29978, 385, 5
14Pull weeds1, 0111, 35772, 782, 7
15Replace light bulb1, 9741, 49343, 161, 3
16Run one block1, 6831, 59653, 265, 3
17Climb one flight of stairs1, 4641, 42855, 071, 4
18Stand one hour1, 5221, 41752, 570, 9
19Sit two hours1, 8371, 45245, 458, 9
20Shop for groceries1, 8561, 45548, 665, 0
21Carry one grocery bag1, 6591, 47352, 968, 8
22Types/computer 30 minutes1, 7831, 38044, 666, 2
23Bag groceries2, 0011, 45342, 162, 8
24Dispose of garbage2, 0661, 45041, 058, 3