Measuring Adjustment to Chronic Skin Disorders Psychology

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Measuring Adjustment to Chronic Skin Disorders Psychology Powered By Docstoc
					Adapted (see footnote) from:


Measuring Adjustment to Chronic
Skin Disorders: Validation of a
Self-Report Measure
  Ulrich Stangier                               Anke Ehlers                                  Uwe Gieler
University of Frankfurt              Institute of Psychiatry (London)                   University of Giessen


Although skin disorders are rarely life threatening,               Following a categorization suggested by
they are often associated with serious emotional                McGrath (1982), skin diseases can pose physical,
distress (for a review, see Stangier & Ehlers, 2000).           interpersonal, or psychological threat, each of
In a study by Hughes, Barraclough, Hamblin, and                 which can lead to problems in adjustment. The aim
White (1983), 30% of 196 dermatological outpa-                  of the present studies was to develop and validate a
tients and 60% of 40 dermatological inpatients re-              questionnaire designed to comprehensively assess
ported impaired mental health. Similarly, Wessley               problems in adjusting to a wide range of skin disor-
and Lewis (1989) reported that 30% of 173 derma-                ders, the Adjustment to Chronic Skin Diseases
tological outpatients showed clinically relevant                Questionnaire (ACS). The items on the scale cover
psychiatric symptoms, indicating a high impact of               a wide range of disease related difficulties ranging
the skin disease. In two recent studies, similar rates          from pain, to behavioral adjustment, to emotional
of psychiatric comorbidity of 33. 4% and 25. 2%,                adjustment.
respectively, were observed in dermatological out-                 In order to assess these different aspects of mal-
patient samples (Aktan, Ozmen, & Sanli, 1998;                   adjustment, we developed the ACS over a series
Picardi, Abeni, Melchi, Puddu, & Pasquini, 2000).               studies with large samples of patients suffering
Rapp, Feldman, Exum, Fleischer, and Reboussin                   from a wide range of dermatological disorders. This
(1999) found that the health-related quality of life            allowed us to examine the degree to which the
of psoriasis patients was comparable to that of pa-             questionnaire is sensitive in showing characteristic
tients with other chronic health conditions, includ-            differences in adjustment problems between differ-
ing cancer, arthritis, hypertension, heart disease,             ent skin diseases that would be expected on the ba-
diabetes, and depression.                                       sis of the different clinical syndromes.
   There is a growing body of research on psycho-
                                                                                       Method
logical treatment of skin disorders. However, as-
sessment instruments that measure the specific                  Generation and Content Analysis of the Item Pool
problems in the patient's adjustment to these disor-
                                                                  The purpose of this study was to identify impor-
ders have been developed only recently. Short
                                                                tant dimensions of problems in adjusting to chronic
questionnaires have been developed for single skin
                                                                skin disorders and to create a comprehensive item
disorders such as psoriasis (Gupta & Gupta, 1995)
                                                                pool. Items were generated from intensive inter-
and facial acne (Martin et al. , 2001). However,
                                                                views with patients and from previous measures.
these questionnaires do not allow a comparison of
                                                                Experts and patients rated the appropriateness and
different skin conditions. In addition, these instru-
                                                                comprehensibility of the items.
ments focus particularly on problems resulting
from the disfigurement by the skin disorders. They                Most of the items included in the original item
do not address other difficulties                               pool were derived from detailed clinical interviews



This document is adapted from a series of research studies that appeared in Psychological Assessment (2003). Vol. 15 (4)
pp. 532-549. The text and data have been adapted and changed for instructional purposes. They do not conform exactly to
the results in the original report. For research or cited in any publication see the original report.
  Stangier et al.                                                                      Chronic Skin Disease Scale



  we conducted between 1984 and 1993 in the Psy-              with the following dermatological disorders:
  chosomatic Unit of the Department of Dermatology               Atopic dermatitis: widespread chronic inflamma-
  at the University of Marburg, Germany, and clini-           tory eczema, characterized by intense itching and
  cal descriptions in the literature. The interviews          thickening of the skin (lichenification).
  resulted in a list of statements that served as the
  basis for preliminary item formulation. In addition,            Contact eczema: inflammatory eczema with
  some items were partially adopted from existing             itching due to a hypersensitivity to contact with irri-
  nonstandardized questionnaires (Bosse & Hünecke,            tating substances (metals, cosmetics, medical
  1978; Müller-Braunschweig & Brähler, 1986). The             drugs).
  items were designed to be understandable and ac-               Psoriasis: sharply confined inflammatory
  ceptable to individuals with restricted medical             patches covered by scales due to a proliferation of
  knowledge. Items referring to the etiology of the           cutaneous cells.
  disease were not included. The items were con-
  structed to cover adjustment problems resulting                Acne: pustulous-papulous blackheads caused by
  from physical, interpersonal, and psychological             obstruction of the sebum discharge, resulting in the
  threat, as described above. The basic item pool was         formation of scars.
  93 items. Preliminary analyses identified a number
                                                                Vitiligo: white patches due to depigmentation,
  of items that had little variance or were not corre-
                                                              which might be confined or widespread across the
  lated with other items in the item pool. These were
                                                              body.
  eliminated. The remaining 51 items are presented
  in Table 1. Theses were examined using principal               Epidermolysis bullosa: rare genetic and often
  components analysis to identify subsets of similar          disfiguring skin disorder associated with auto-
  items that could be treated as uncorrelated sub-            destructive carcinogenic blisters and a progressive-
  scales.                                                     in severe cases, life-threatening-course.
  Participants                                                   Patients had to be 18 years and older and had to
                                                              have been diagnosed with one of the qualifying di-
     The sample comprised 442 outpatients and inpa-
                                                              agnoses by their treating dermatologists. The der-
  tients from the Dermatological Department of the
                                                              matologists invited patients to participate in the
  University of Marburg and the Tomesa Derma-
                                                              study immediately after admission for inpatient
  tological Hospital in Bad Salzschlirff, Germany,
                                                              treatment or the beginning of the outpatient treat-
                                                              ment.


                     Table 1:Adjustment to Chronic Skin Diseases Questionnaire (ACS)

1.    I am worried about my appearance.                                                   1   2   3   4   5   6   7
2.    My skin disease prevents me from getting a good night's sleep.                      1   2   3   4   5   6   7
3.    My skin disease makes me less attractive than most other people.                    1   2   3   4   5   6   7
4.    I avoid certain situations because of skin disease.                                 1   2   3   4   5   6   7
5.    My skin prevents me from making new friends.                                        1   2   3   4   5   6   7
6.    I often feel nervous.                                                               1   2   3   4   5   6   7
7.    I feel sexually inhibited because of my skin disease.                               1   2   3   4   5   6   7
8.    Because of my skin disease I cannot realize many of my wishes.                      1   2   3   4   5   6   7
9.    I often ruminate about why it is me who has the disease.                            1   2   3   4   5   6   7
10.   I can't help looking at other people's skin.                                        1   2   3   4   5   6   7
11.   Because of the disease, it is difficult for me to find a (new) partner.             1   2   3   4   5   6   7
12.   In the morning I inspect my skin to look for new abrasions.                         1   2   3   4   5   6   7
13.   I get easily upset.                                                                 1   2   3   4   5   6   7
14.   I can still make a lot of progress in coping with the disease.                      1   2   3   4   5   6   7
15.   I can still improve my skin care.                                                   1   2   3   4   5   6   7
16.   I withdraw from my family/partner out of consideration for them/bim/her.            1   2   3   4   5   6   7
17.   It takes a lot of energy to resist scratching my skin.                              1   2   3   4   5   6   7
18.   I do not pay enough attention to my nutrition.                                      1   2   3   4   5   6   7
19.   I avoid swimming or saunas because other people might be disgusted.                 1   2   3   4   5   6   7




                                                          2
 Stangier et al.                                                                          Chronic Skin Disease Scale




Table 1 (continued)

20.    I feel guilty when I have scratched my skin so it bleeds.                              1   2   3   4   5   6   7
21.    I often feel tired.                                                                    1   2   3   4   5   6   7
22.    I would love to be as carefree as other people.                                        1   2   3   4   5   6   7
23.    I have the feeling that others stare at my skin lesions.                               1   2   3   4   5   6   7
24.    My skin disorder restricts my life.                                                    1   2   3   4   5   6   7
25.    It bothers me that I cannot eat or drink some things that I like.                      1   2   3   4   5   6   7
26.    I should know more about my skin disease.                                              1   2   3   4   5   6   7
27.    I often scratch myself without being aware of it.                                      1   2   3   4   5   6   7
28.    I feel that people treat me particularly delicately because of my skin disease.        1   2   3   4   5   6   7
29.    Being chronically ill is very expensive.                                               1   2   3   4   5   6   7
30.    I observe closely how others respond to my skin disease.                               1   2   3   4   5   6   7
31.    I am afraid of being rejected because of my skin disease.                              1   2   3   4   5   6   7
32.    I lack energy.                                                                         1   2   3   4   5   6   7
33.    I cannot do certain jobs because of my skin disease.                                   1   2   3   4   5   6   7
34.    When I look into a mirror I am mainly inspecting my skin.                              1   2   3   4   5   6   7
35.    My family/my partner is also distressed by my skin disease.                            1   2   3   4   5   6   7
36.    I am afraid that my skin disease will get worse and worse.                             1   2   3   4   5   6   7
37.    The disease takes away much of my spontaneity.                                         1   2   3   4   5   6   7
38.    Itching is a sign that I feel uncomfortable.                                           1   2   3   4   5   6   7
39.    I sometimes feel desperate because of my skin disease.                                 1   2   3   4   5   6   7
40.    I worry about what other people think about my skin disease.                           1   2   3   4   5   6   7
41.    I often think about what my life would be like without my skin disease.                1   2   3   4   5   6   7
42.    I feel uncomfortable when other people see me naked.                                   1   2   3   4   5   6   7
43.     Many things upset me.                                                                 1   2   3   4   5   6   7
44.    The itching makes me exhausted.                                                        1   2   3   4   5   6   7
45.    I get angry with myself for making my skin condition worse by scratching
          it after I have put in a lot of effort making it better.                            1   2   3   4   5   6   7
46.    I should lead a less stressful life.                                                   1   2   3   4   5   6   7
47.    I often cannot concentrate.                                                            1   2   3   4   5   6   7
48.    I pay a lot of attention to my skin.                                                   1   2   3   4   5   6   7
49.    Sometimes I feel on the edge of having an anger outburst.                              1   2   3   4   5   6   7
50.    I feel dependent on cortisone.                                                         1   2   3   4   5   6   7
51.    I get into trouble at work because I am often off sick.                                1   2   3   4   5   6   7



      Data Analysis and Results                                    The first principal component captured a signifi-
    Principle Components Analysis. Principal com-               cant proportion of the total information in the item
  ponents analysis of the 51 items yielded 5 principal          set into a single weighted linear composite. Four
  components with eigenvalues greater than 1.0. The             additional principal components had eigen values
  factor loadings (correlations of items with compo-            greater than 1.0 (i.e., greater than a single variable
  nents 1-5 are presented in Table 2.                           taken alone) and were also retained as subscales.
                                                                The eigenvalues (sum of the squared loadings on 51
    The analysis identified five uncorrelated princi-           items) for each of the principal components were
  pal components. Because principal components                  15.4, 3.6, 2.3, 2.0, and 1.8.
  analysis includes all the variance of each item, the
  communality (sum of each item’s squared loadings                 Interpretation of the principal components. The
  across all 51 principal components) was 1.0 for               results of the principal components analysis are pre-
  each item.                                                    sented in Table 2.




                                                            3
   Stangier et al.                                                                       Chronic Skin Disease Scale

                          Table 2 Adjustment to Chronic Skin Diseases Questionnaire (ACS)
                                          Principal Components Analysis
Scale 1 Social Anxiety/Avoidance
1. I am worried about my appearance.                                              .60      .21      .35    .15        .01
3. My skin disease makes me less attractive than most other people.               .67      .18      .21    .16        .07
4. I avoid certain situations because of skin disease.                            .59      .22      .23    .15        .26
5. My skin prevents me from making new friends.                                   .60      .15      .23    .03        .01
7. I feel sexually inhibited because of my skin disease.                          .76      .04      .06    .14        .09
8. Because of my skin disease I cannot realize many of my wishes.                 .75      .16      .18    .06        .34
11. Because of the disease, it is difficult for me to find a (new) partner.       .74      .07      .23    .06        .14
16. I withdraw from my family/partner out of consideration for them.              .68      .16      .08    .09        .09
19. I avoid swimming or saunas because other people might be disgusted.           .63      .10      .13    .06        .16
22. I would love to be as carefree as other people.                               .48      .13      .37    .19        .23
23. I have the feeling that others stare at my skin lesions.                      .49      .10      .33    .07        .18
24. My skin disorder restricts my life.                                           .53      .24      .19    .19        .39
31. I am afraid of being rejected because of my skin disease.                     .53      .06      .48    .11        .07
37. The disease takes away much of my spontaneity.                                .59      .15      .20    .24        .34
42. I feel uncomfortable when other people see me naked.                          .59      .06      .17    .30        .01
Scale 2 Itch-Scratch Cycle
2. My skin disease prevents me from getting a good night's sleep.                 .16      .53      .01    .17        .29
12. In the morning I inspect my skin to look for new abrasions.                   .13      .64      .23    .08        .03
17. It takes a lot of energy to resist scratching my skin.                        .15      .78      .05    .19        .14
20. I feel guilty when I have scratched my skin so it bleeds.                     .20      .60      .26    .08        .16
27. I often scratch myself without being aware of it.                             .11      .72      .01    .19        .07
38. Itching is a sign that I feel uncomfortable.                                  .16      .62      .24    .22        .17
44. The itching makes me exhausted.                                               .19      .79      .16    .19        .19
45. I get angry with myself for making my skin condition worse by scratching      .09      .76      .13    .16        .12
         it after I have put in a lot of effort making it better.
50. I feel dependent on cortisone.                                                .14      .40      .01    .09        .20
Scale 3 Helplessness
9. I often ruminate about why it is me who has the disease.                       .31      .09      .63    .03        .11
10. I can't help looking at other people's skin.                                  .11      .14      .61    .20        .01
30. I observe closely how others respond to my skin disease.                      .32      .04      .65    .10        .17
34. When I look into a mirror I am mainly inspecting my skin.                     .20      .28      .55    .29        .03
36. 1 am afraid that my skin disease will get worse and worse.                    .27      .23      .54    .20        .10
39. I sometimes feel desperate because of my skin disease.                        .40      .43      .49    .28        .19
40. I worry about what other people think about my skin disease.                  .27      .03      .67    .09        .15
41. I often think about what my life would be like without my skin disease.       .34      .13      .63    .11        .20
48. I pay a lot of attention to my skin.                                          .04      .25      .51    .18        .19
Scale 4 Anxious-Depressive Mood
6. I often feel nervous.                                                          .21      .32      .10    .63        .14
13. I get easily upset.                                                           .17      .20      .14    .56        .15
21. I often feel tired.                                                           .13      .17      .02    .60        .09
32. I lack energy.                                                                .44      .04      .01    .52        .14
43. Many things upset me.                                                         .11      .09      .22    .64        .10
46. I should lead a less stressful life.                                          .05      .08      .07    .59        .06
47. I often cannot concentrate.                                                   .07      .16      .16    .67        .01
49. Sometimes I feel on the edge of having an anger outburst.                     .09      .28      .33    .61        .03
Scale 5 Impact on Quality of Life
25. It bothers me that I cannot eat or drink some things that I like.             .04      .22      .27    .03        .55
28. I feel that people treat me delicately because of my skin disease.            .04      .10      .11    .21        .41
29. Being chronically ill is very expensive.                                      .13      .24      .06    .01        .35
33. I cannot do certain jobs because of my skin disease.                          .31      .20      .17    .13        .38
35. My family/my partner is also distressed by my skin disease.                   .02      .22      .08    .09        .45
51. I get into trouble at work because I am often off sick.                       .11      .05      .25    .09        .38

Note: 4 items (14, 15, 18, and 26 ) did not have substantial loadings on any of the first 5 components.

                                                             4
Stangier et al.                                                                      Chronic Skin Disease Scale




  The contents of the sub-scales identified in the            Subscale 5: Impact on Quality of Life.
analysis are as:
                                                               The subscale refers to social impairment and re-
  Subscale 1: Social Anxiety/Avoidance.                     strictions in various domains of life such as profes-
                                                            sion, family, nutrition, and financial strain. Higher
  This subscale refers to coping with the impact of
                                                            scores indicate more limitations in quality of life.
the skin disorder on social relationships and self-
concept. It includes items on emotional (social                                  Discussion
anxiety), cognitive (expectation of rejection), and
                                                               The principal components analysis identified a
behavioral (avoidance) reactions in situations asso-
                                                            number of distinct ways in which patients with
ciated with the exposure of the visible cutaneous
                                                            chronic skin disease differ. The subscales identi-
symptoms. In addition, negative self-perception
                                                            fied in the analysis can help clinicians and research-
and the feeling of being stigmatized are addressed.
                                                            ers draw a more complete picture of individual pa-
Higher scores indicate more severe social anxiety,
                                                            tients. They also highlight the fact that the extent
avoidance tendencies, and negative self-perception.
                                                            of psychological problems cannot be predicted by
The a priori dimensions expectation of rejection,
                                                            the severity of physical symptoms alone. This
social avoidance, loss of attractiveness, and hyper-
                                                            should encourage clinicians to devote the time and
vigilance to social reactions are represented in this
                                                            attention necessary to understand and address each
scale.
                                                            kind of difficulty in its own right.
  Subscale 2: Itch-Scratch Cycle.
                                                               The fact that chronic skin disease has a wide
  This subscale consists of items measuring the             range of physical and psychological consequences
perceived inability to cope with itching, feelings of       for patients and that patients experience different
helplessness concerning scratching, and the per-            patterns of difficulties has important implications
ceived impairment by the vicious cycle of itching           for research. For example, it is important to con-
and scratching. Higher scores reflect more negative         duct treatment studies to see whether treating physi-
reactions to itching and a loss of self-control over        cal symptoms alone (as often occurs) completely
scratching. It related to the a priori dimensions of        eliminates social and psychological difficulties.
loss of control related to scratching and, in part,         Because stress is often cited as a factor in the cause
psychophysiological sensitivity to stress.                  and severity of many skin disorders, it is also worth
                                                            examining whether treatments directed at the social
  Subscale 3: Helplessness.
                                                            and psychological difficulties can reduce the fre-
  This subscale focuses mainly on loss of control           quency and severity of physical symptoms. Re-
over the course of the disease. The items refer to          search on psychological disorders such as depres-
the experience of helplessness concerning the re-           sion has shown that medical treatment plus psycho-
currence of rashes, anticipation of a dissemination         logical treatment is more effective than either alone.
of lesions, and hypochondriacal preoccupation with          It is important to know whether this applies to
the skin condition. Higher scores reflect more help-        chronic skin disease as well.
lessness and loss of control over the skin condition,
capturing the content of the a priori dimensions of
loss of control related to the course of the disease                            References
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                                                                stress and anxiety in medical disorders(pp.
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Stangier et al.                                            Chronic Skin Disease Scale



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