Patient reported outcomes in chronic skin diseases: eHealth applications for
clinical practice
van Cranenburgh, O.D.
Publication date
2016
Document Version
Final published version
Link to publication
Citation for published version (APA):
van Cranenburgh, O. D. (2016). Patient reported outcomes in chronic skin diseases: eHealth
applications for clinical practice.
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O.D. van Cranenburgh
*, S.B.w. Nijland
*, J. de Korte, R. Lindeboom, M.A. de Rie,
J.A. ter Stege, C.A.C. Prinsen
ExPERIENCE MODERATE SATISfACTION
wITH TREATMENT AND IMPAIRMENT
Of qUALITy Of LIfE
aBstract
Background: Although considered relevant, little is known about satisfaction with
treat-ment and health-related quality of life (HRQoL) among lichen sclerosus (LS) patients.
objectives: In a cross-sectional study, we aimed to examine 1) satisfaction with
treat-ment, 2) patient characteristics associated with satisfaction, and 3) HRQoL in Dutch LS patients.
methods: Members of the Dutch LS Patient Association (N=750) were invited to
com-plete a web-based survey. We measured satisfaction with treatment with a study-specific questionnaire, and HRQoL with the Skindex-29. We calculated domain scores for Symp-toms, Emotions, and Functioning, and categorized scores into little, mildly, moderately, or severely impaired HRQoL. We used a multiple linear regression analysis to examine whether patient characteristics were associated with treatment satisfaction.
results: 303 patients (40.4%) were included. Patients under current treatment (N=265,
87.4%) were moderately satisfied with their treatment. Patients rated ‘treatment effec-tiveness’ as most important, although 58 (22%) were dissatisfied with the effectiveness of their current treatment. More impairment on the HRQoL Emotions domain and a higher degree of disease severity were both associated with lower satisfaction with treatment and explained in total 13.5% of the variance in tratment satisfaction. On all HRQoL domains, a third of the patients (34.7% - 38.9%) reported severe impairment.
conclusions: LS patients are moderately satisfied with their treatment, and one third
of patients experience severe impairment of HRQoL. When enhancing treatment sat-isfaction and, thereby, the quality of care for LS patients, focus should be on improving the effectiveness of medical treatments.
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introduction
Lichen Sclerosus (LS) is a chronic inflammatory skin disease, primarily affecting the anogenital region. Frequent symptoms are itch and pain, but LS also causes dysuria, dyspareunia, and sexual dysfunction1-3. Prevalence estimates of LS in adults range
from 1:30 to 1:10004,5, the vast majority being female6. Possible treatment options can
be categorized into topical treatment (e.g. corticosteroids), systemic treatment (e.g. ciclosporin) and other (e.g. phototherapy or surgery)1. Those treatments only offer a
temporary suppression and/or remission of symptoms, but are not curative7.
When evaluating treatment effectiveness for LS, results are mainly based on clini-cal outcomes as measured by physicians and/or researchers, but evidence in terms of patient reported outcomes (PROs) is relatively scarce. PROs are assessments of any aspect of a patient’s health status and/or treatment impact that are directly expressed by the patient, i.e. without the interpretation of anyone else8. The importance of PRO
mea-surement is increasingly being acknowledged in healthcare and outcomes research, as optimal treatment outcomes can only be achieved when patient defined benefits and goals are taken into account9,10. In dermatology, the concordance between
clinician-re-ported measurements and PRO measurement was found to be poor 11-13, stressing the
need for the use of PROs. Moreover, a mix of clinician- and patient-reported outcome measures is recommended to evaluate treatment quality or quality of care14.
Patients' satisfaction with treatment shows their unique opinion on different as-pects of a given treatment15 and is considered an important indicator of quality of care.
It may provide input for specific actions to improve quality of care16-18, which in turn may
lead to an improvement of health related quality of life (HRQoL)19.
Yet, little is known about LS patients’ satisfaction with treatment. The limited stud-ies on this topic found that high satisfaction rates were reported in women who under-went surgical repair of clitoral phimosis20, cryosurgery combined with an intralesional
steroid21 or perineal urethrostomy22. Female LS patients were not satisfied with a
monthly anesthetic/steroid subdermal injection in addition to topical use of Clobetasol, despite the effectiveness23. In another study, in male patients with LS of the glans
pe-nis, satisfaction rates of various surgical techniques ranged from 84% to 100%24-26.
In addition, treatment satisfaction was only evaluated globally, with one question, thereby neglecting the multidimensionality of the construct. Treatment satisfaction con-sists of different domains, such as effectiveness, safety and convenience27. Moreover,
to be able to use satisfaction scores as an indicator of quality of care, e.g. to prioritize actions to improve the quality of care, the importance patients attach to each domain should be taken into account28. Additionally, when studying patients’ satisfaction with
treatment, it can be useful to examine patient characteristics associated with satisfac-tion with treatment, as this informasatisfac-tion provides insight into the type of patients that need more attention in clinical practice.
HRQoL is an important and well-established PRO evaluating the impact of disease and treatment on physical, psychological and social functioning and well-being 29. A
previous study showed impaired HRQoL among LS patients, below HRQoL levels of the general population and comparable to HRQoL levels of patients with other skin dis-eases 30. Also, LS patients were especially bothered by somatic symptoms and
emo-tional stress, while social interactions played a minor role 7. Various treatments for LS
led to improvement of HRQoL21,31-33, whereas another did not 33.
Studies on satisfaction with treatment and HRQoL were performed in small sam-ples. To provide better insight into LS patients’ satisfaction and HRQoL, more evidence is needed, especially from larger samples of LS patients. In the present survey we aimed to examine 1) LS patients’ satisfaction with their treatment, 2) patient characteris-tics associated with satisfaction, and 3) LS patients’ HRQoL, in a relatively large sample.
methods and materiaLs study design and participants
This study was conducted as a cross-sectional, web-based survey. On behalf of the LS Patient Association, all members (N=750) received an invitational email. Additionally, a call to participate was published on the LS Patient Association’s website. We included patients who reported that they were diagnosed with LS, were previously and/or cur-rently treated for LS, were 18 years or older, had access to the internet, were mentally and/or physically able to complete an online questionnaires, and had sufficient mastery of the Dutch language. Patients who registered for participation and met inclusion crite-ria, received an email from the researchers, including instructions on how to complete the survey, a personal entry code, and a link to the web-based survey. Patients gave informed consent before administering the web-based survey. Reminders by email were sent to non-respondents one and two weeks after the invitation email. Data were collected March 2012.
The study was exempted from ethical approval by the Medical Ethics Review Com-mittee of the Academic Medical Center of Amsterdam, as non-intrusive questionnaire research is not subject to the Dutch Medical Research Involving Human Subjects Act (WMO). A written confirmation of this policy was provided (WS12_022#12.17.0031).
measures
Treatment satisfaction
Since there were no LS-specific questionnaires available to measure satisfaction with treatment, we developed a study-specific questionnaire. Based on literature research, two validated, generic questionnaires for satisfaction with treatment27,34 and a
previ-ous, comparable study-specific questionnaire to measure satisfaction with treatment in psoriasis patients28, we determined six domains of treatment satisfaction: ‘Treatment
Effectiveness’, ‘Treatment Safety’, ‘Treatment Convenience’, ‘Doctor-Patient Communi-cation’, ‘Information about the Treatment’, and ‘Organization of the Treatment’.
To check whether these specific domains of treatment satisfaction were also rele-vant to LS patients, we organized a focus group meeting with nine patients recruited via the LS Patient Association. Patients differed in age, gender, disease-severity, disease duration, and treatment experiences. Members of the board of the LS Patient Associa-tion were excluded from participaAssocia-tion in the focus group meetings. During a three hour meeting, the focus group discussed their satisfaction and dissatisfaction with various aspects of their current treatment and treatments they had in the past. Also, domains in
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which those characteristics could be categorized and the relative importance of these domains were discussed. We found that all mentioned aspects could easily be catego-rized in the previously defined domains.
The questionnaire consisted of nine statements with a 5-point response scale with labelled endpoints (0=very dissatisfied, 4=very satisfied): three questions about pa-tients global satisfaction (‘How satisfied are you with your overall received treatment / treatment in the past/ current treatment?’) and six domain-specific questions ('How sat-isfied are you with the Effectiveness/ Safety/ Treatment Convenience/ Doctor-Patient Communication/ Organization of the Treatment/ Information about the treatment?'). Domains of satisfaction were illustrated with examples mentioned by the focus group participants. Additionally, the questionnaire included one item to determine relative importance of each domain of treatment satisfaction ('How important are the following treatment characteristics to you when choosing a treatment?'). Patients had to divide 10 points over the six domains. Patients were instructed to assign more points to a do-main that they found more important.
Health-Related Quality of Life
To measure HRQoL, patients completed the Skindex-29, a well-established dermatol-ogy-specific HRQoL questionnaire35-38 and recommended as the instrument of choice
to measure HRQoL in dermatology38,39. The Skindex-29 measures patients’ HRQoL
during the past week and consists of 29 items, forming three domains: Symptoms (7 items), Emotions (10 items) and Functioning (12 items). One item about possible side effects of medication and/or treatment (item 18) is included in the questionnaire, but is excluded from the calculation of domain- or overall scores. Items are answered on a five-point scale (ranging from ‘never’ to ‘all the time’). Higher scores indicate lower lev-els of HRQoL. Established cut-off scores enable categorization into mildly, moderately, or severely impaired HRQoL40,41.
Background characteristics
Socio-demographic and clinical characteristics were assessed by self-report and in-cluded gender, date of birth, marital status, educational level, employment status, date of diagnosis, location(s) of LS, disease severity (0=no symptoms to 4=very severe symptoms), medical treatment(s) in the past, current medical treatment(s), and duration of current treatment.
The web-based pilot-questionnaire (see Appendix) was tested by three randomly se-lected focus group participants on wording, structure, and readability and was adjusted based on their feedback.
statistical analyses
Total treatment satisfaction scores were calculated, by summing 7 items concerning cur-rent treatment (range 0-28, Cronbach’s alpha=0.89). We examined the absolute and rela-tive frequencies of the response options for the treatment satisfaction items separately .
Median importance scores (0-10 points) were multiplied with the percentage of pa-tients that were dissatisfied (scores 0 and 1 were considered to reflect dissatisfaction)
and divided by 100, resulting in a ‘quality improvement’ score. A higher score indi-cates more potential for quality improvement from patients’ perspective28,42-45.
To examine whether patient characteristics were associated with treatment sat-isfaction, we used multiple linear regression analysis using a forward method. The following patient characteristics were included: age (years), marital status (married or living together versus single), level of education (high versus low), employment status (paid/voluntary work or studying versus not working), duration of LS (years), comorbidity (presence versus absence of other (skin) diseases), severity of skin disease (5 point scale) and the three HRQoL domain scores (Symptoms, Emotions, Functioning). Overall fit of the model was evaluated using the adjusted R-square statistic. T-statistic and standardized betas were evaluated for each individual pre-dictor. Assumptions to perform multiple regression analysis were checked via resid-uals analysis (normal distribution of residresid-uals and constant variance assumption).
To evaluate HRQoL, we calculated frequencies for “mild”, “moderate” and “se-vere” impairment based on cut-off scores on the Skindex-29 domain and overall scores 40,41 . In addition, we created a fourth group, “no or little” impairment, for
scores below the cut-off scores for “mild” impairment. Skindex-29 scores were presented as means (SD) as data were normally distributed. Data were analysed in SPSS software (version 19).
resuLts
Patient population
A total of 386/750 (51.5%) patients of the Dutch LS Patient Association subscribed for the survey. Forty-seven patients were excluded as they did not meet the inclu-sion criteria. The remaining 339 patients received an invitational email. Thirty-six patients did not respond (reasons unknown), resulting in 303/750 (40.4%) patients for further analysis. 265/303 (87.4%) patients were currently under medical treat-ment (Background characteristics, see Table 1).
treatment satisfaction
Table 2 shows patients’ satisfaction with ‘Treatments overall’, ‘Treatment in the past’, and ‘Current treatment’. ‘Effectiveness’ received the highest importance scores (median 3.0, IQR 2.0). Fifty-eight (22.0%) patients were dissatisfied with the effectiveness of their current treatment, resulting in the highest quality improvement score (0.7). Both ‘Doctor-Patient Communication’ and ‘Safety’ were rated as sec-ond most important domain. As a larger proportion of patients was dissatisfied with ‘Safety’ of treatment (17.1%) compared to ‘Doctor-Patient Communication’ (12.3%), ‘Safety’ received the second highest quality improvement score (0.3).
Multiple linear regression analysis (Table 3) revealed that in Step 1 HRQoL Emotions explained 12% of variance (F change(1,240)=32.803, p<.001) in treatment satisfaction scores. After addition of disease severity in step 2 the total explained variance by all considered variables was 13.5% of variance (F change(1,239)=4.036,
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table 1Background characteristics
characteristics total sample sub samplea
n=303 % n=265 %
Female 294 97.0 260 98.1
age (years), mean (sd) 54.8 (11.5) 55.3 (11.4)
marital status
Married or living together 241 79.5 209 78.9
Single 62 20.5 56 21.1 educational level High 134 44.2 118 44.5 Low 169 55.8 147 55.5 ethnicity Caucasian 287b 95.7 251c 95.8 Other 13b 4.3 11c 4.2 employment
Paid/voluntary work, studying 200 66.0 172 64.9
Not working 103 34.0 93 35.1 smoking Yes 25 8.3 19 7.2 No 278 91.7 246 92.8 Family with Ls Yes 26 8.6 24 9.1 No 192 63.4 171 64.5 Unknown 85 28.1 70 26.4
other skin diseases
Yes 76d 25.2 70e 26.5
No 226d 74.8 194e 73.5
other diseases
Yes 135f 46.4 122g 47.8
No 156f 53.6 133g 52.2
Location of Ls#
Genital 301 99.3 263 99.2
Cutaneous 27 8.9 23 8.7
Oral 4 1.3 3 1.1
Other 8 2.6 6 2.3
Patient reported disease severity
No symptoms 51 16.8 40 15.1
Mild symptoms 86 28.4 66 24.9
Moderate symptoms 121 39.9 116 43.8
Severe symptoms 36 11.9 35 13.2
Very severe symptoms 9 3.0 8 3.0
duration of Ls (y), median (iQr) 4h (6) 4i (6)
medical treatment in the past
One or more medical treatment(s)
in the past 194 64.0 172 64.9
No medical treatment(s) in the past 109 36.0 93 35.1
other treatment in the pastj
One or more other treatment(s) in
the past 71 23.4 62 23.4
No other treatment(s) in the past 232 76.6 203 76.6
current medical treatment
No current medical treatment 38 12.5 One or more current medical
treat-ment(s) 265 87.5
Topical treatment#
Clobetasol propionate 178 67.2
Emollients of indifferent topical
treatment 130 49.1 Fluticasone propionate 23 8.7 Tacrolimus 13 4.9 Bethametasone 11 4.2 Mometasone furoate 8 3.0 Vitamin D 8 3.0 table 1, continued
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Clobetasone butyrate 7 2.6 Triamcinolone acetonide 7 2.6 Desoximetasone 5 1.9 Hydrocortison butyrate 4 1.5 Betamethasone valerate 3 1.1 Betamethasone dipropionate 2 0.8 Desoximetasone 2 0.8 Systemic treatment Ciclosporin 1 0.4 Acitretin 1 0.4 Prednisone 1 0.4Other medical treatment 49 18.5
current other treatmentj
One or more current other
treat-ment(s) 30 9.9 24 9.1
No current other treatment(s) 273 90.1 241 90.9
current treatment byk # Gynaecologist 203 77.5 Dermatologist 87 33.2 General practitioner 10 3.8 Alternative healer 6 2.3 Sexologist 5 1.9 Urologist 2 0.8 Other 13 5.0
time since start current treatment
(y), median (iQr)l 3 (4)
note: iQr=inter quartile range. a Current medical treatment; bn=302; c n=262; d n=302; e n=264; f n=291; g n=255; h n=293; i n=257; j other treatment options, such as: pelvic physiotherapy, physiotherapy or chirurgic treatment; k n=262; l n=259. # Percentages may not add up to 100 due to the possibility to give multiple answers.
tab le 2 sa tis fa cti on w ith t re atm en t, p erc eiv ed i m po rta nc e o f d om ain s o f s ati sfa cti on a nd q ua lity i m pro ve m en t s co re s na Ve ry dis sa tis fie d D is sa tis fie d n eu tra l Sa tis fie d Ve ry Sa tis fie d im po rta nce sc or e (n =2 80 ) Q ual ity im prov em en t sc or eb n ( %) n ( %) n ( %) n ( %) n ( %) m ed ian (iQ r) o ve ra ll re ce ive d t re atm en t 303 18 (5 .9) 51 (1 6.8 ) 71 (2 3.4) 142 (4 6.9 ) 21 (6 .9) -Past m ed ic al tr ea tm en t 19 4 29 (15 .2) 34 (1 7. 8) 43 (2 2.5 ) 64 (3 3.5 ) 21 (11 .0) -c urr ent m ed ic al t re atm ent G lob al sa tisf ac tio n 26 4 8 ( 3.0) 20 (7. 6) 66 (2 4.9 ) 12 3 ( 46 .4) 47 (1 7.7 ) -Eff ec tiv en es s 26 4 14 (5 .3) 44 (1 6.7 ) 58 (2 2.0 ) 11 3 ( 42 .6) 35 (1 3.3 ) 3.0 (2 .0 ) 0.7 Sa fet y 26 4 6 (2 .3) 39 (14 .8) 98 (3 7.1 ) 10 0 ( 37. 9) 21 (8 .0) 2.0 (1 .0 ) 0. 3 Do cto r-p atie nt c omm un ica tion 261 8 ( 3.1 ) 24 (9. 2) 48 (1 8.4 ) 96 (3 6.8) 85 (3 2.6 ) 2.0 (1 .0 ) 0. 2 In for m atio n 262 14 (5 .3) 32 (12 .2) 56 (2 1. 4) 10 6 (4 0.5 ) 54 (2 0.6 ) 1. 0 ( 1. 0) 0. 2 C on ven ien ce 26 4 8 ( 3.0) 19 (7. 2) 57 (2 1. 5) 13 9 ( 52 .7) 41 (1 5.5 ) 1.0 (0 .1) 0.1 O rg ani za tio n 25 9 9 (3 .5) 28 (1 0.8 ) 52 (2 0.1 ) 10 4 (4 0.2 ) 66 (2 5.5 ) 1. 0 ( 1. 0) 0.1 d as h ( -) i nd ic ate s n o i m po rta nc e s co re o r q ua lity i m pro ve m en t s co re a va ila ble . a V ari ou s n d ue t o m iss in g v alu es ; b M ed ian i m po rta nc e s co re s m ult ip lie d w ith t he p erc en ta ge o f p ati en ts t ha t w ere ( ve ry ) d iss ati sfi ed d ivi de d b y 1 00 .
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higher disease severity (t(239)=-2.009, p<.001) were significantly associated with lower treatment satisfaction.
health-related Quality of Life
On all domains, more than a third (34.7-38.9%) of patients experienced a severely impaired HRQoL (Table 4). Mean HRQoL scores were in the ‘moderate’ range for the Overall score and for the Symptoms domain, and were in the ‘mild’ range for the Emo-tional and Functioning domain.
table 3
Factors associated with treatment satisfaction in patients with Ls who had current medical treatment (n=242)
unstandardised Beta standard error standardised Beta step 1 Constant 21.49 .62 HRQoL Emotions -.09 .02 -.35** step 2 Constant 22.11 .69 HRQoL Emotions -.07 .02 -.27** Disease severity -.78 .39 -.14*
Note: R2=.120 for step 1, ΔR2=.015 for step 2 (p<.001). * p <.05, ** p <.001.
table 4
hrQoL impairment in Ls patients (n=303)
Frequencies descriptives
no or little
impairment impairmentmild impairmentmoderate impairmentsevere mean (sd) 95% ci
n (%) n (%) n (%) n (%) Lower
bound Upper bound Symptoms 112 (37.0) 20 (6.6) 66 (21.8) 105 (34.7) 43.9 (20.5) 41.6 46.2 Emotions 108 (35.6) 44 (14.5) 33 (10.9) 118 (38.9) 33.8 (21.5) 31.4 36.2 Functioning 120 (39.6) 54 (17.8) 23 (7.6) 106 (35.0) 30.1 (21.0) 27.7 32.5 Overall 89 (29.4) 57 (18.8) 76 (25.1) 81 (26.7) 34.7 (19.1) 32.5 36.9
discussion
The results of our study indicate that LS patients were moderately satisfied with their cur-rent treatment. Effectiveness of treatment was identified as the most important domain for quality improvement. More impairment on the HRQoL Emotions domain and more se-vere disease were both associated with lower satisfaction with treatment. Our study also showed that HRQoL is severely impaired on all domains in a third of LS patients.
Most of the included patients used a fatty ointment or Clobetasol propionate, which is in agreement with the Dutch LS treatment Guideline46. Patients were only moderately
satisfied with the effectiveness of their current treatment and almost 60% of the pa-tients experienced a moderate or severely impaired HRQoL on the domain ‘Symptoms’. Apparently, the treatment they received was not (yet) able to sufficiently suppress their LS symptoms.
LS patients rated the effectiveness of treatment as most important. This is con-sistent with earlier studies in patients with other chronic skin diseases, such as pso-riasis27,28 and lichen planus47. Our finding that doctor-patient communication was also
rated as an important domain, is consistent with earlier results showing that physician’s interpersonal skills were a relevant factor in determining patient satisfaction with care48.
In our present study, we found no significant association between age and treat-ment satisfaction, whereas previous research showed that, in general, older people are more satisfied14. A previous study in dermatological outpatients48 found an association
of satisfaction with the HRQoL symptoms domains, but not with the emotions domain as we did.Those differences may be explained by differences in patients characteris-tics in both study samples.
We found lower mean scores on all domains of HRQoL, i.e. less impairment, than in a previous study in Dutch LS patients30. Whereas categorization based on cut-off
scores was comparable in both studies for the Symptoms domain and Overall score, i.e. “moderate” impairment, results for the Emotions and Functioning domains differed: patients in our sample experienced “mild” impairment, whereas Lansdorp et al. report-ed scores of “moderate” impairment. Both samples includreport-ed members of the LS Patient Association and experienced comparable disease severity, which explains the similar-ity in findings with respect to the Symptoms domain. We have found no explanation for the differences between both studies.
We acknowledge several limitations of this study. Although we included 303 pa-tients, the response rate was relatively low (40%). Moreover, our sample may not be representative for the whole LS population as we only included members of the Dutch LS patient association, as almost all included patients were female (97.0%), and as we excluded patients without access to a computer and/or internet. From research in on-cology, it is known that members of a patient association are generally female, higher educated, white, and middle class when compared to non-members49. As the
preva-lence of LS is much higher in women, it is not surprising that our sample consisted of a majority of females. Female patients are likely to experience higher HRQoL impairment then males50,51, thus our results may reflect an overestimation of HRQoL impairment.
Another limitation of our study is the use of an adapted treatment satisfaction ques-tionnaire from a previous study in psoriasis patients28, setting limits to the reliability.
3
However, the internal consistency (Cronbach’s alpha = 0.89) of the overall score in our study sample exceeded the generally accepted value (>0.70) for group comparisons. At last, all clinical characteristics were self-reported via the web-based survey, rather than confirmed by a health care provider.
In future research, it would be interesting to explore satisfaction and HRQoL in LS patients by making adjusted comparisons between specific treatment modalities. How-ever, larger study sizes will be needed for those comparisons. Also, examining chang-es over time in satisfaction and/or HRQoL would add to the current knowledge.
For daily clinical practice, we recommend to recurrently assess LS patients’ satis-faction and HRQoL in addition to clinical measures, to provide a more detailed picture of patients’ needs, opinions, and impact of LS on daily life and to identify the need for additional support. Actively involving patients in their health care may in turn lead to higher satisfaction, better doctor-patient communication, more treatment adherence, improved recovery, and better health outcomes52-55. Routine measurement of PROs in
daily practice may be facilitated by a web-based application, enabling the automated calculation of scores and graphical representation of results. Nevertheless, implemen-tation of such an intervention is not self-evident and requires commitment and time of health care providers and supporting staff56.
In conclusion, our study showed that patients with LS are moderately satisfied with their treatment and experience a moderately impaired HRQoL. When enhancing treat-ment satisfaction for LS patients and, thereby, the quality of care for LS patients, focus should be on improving medical treatments’ effectiveness.
acknoWLedGement
The authors would like to thank all patients who participated; the Dutch Lichen Scle-rosus Patient Association (Stichting Lichen ScleScle-rosus) for their cooperation; Marc van Gestel and Femke Voorn for their input on behalf of the Dutch LS Patient Association; and Heleen de Vries for the technical construction of the web-based questionnaire.
FundinG sources
This study was financially supported by the Dutch Lichen Sclerosus Patient Association.
conFLict oF interest
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aPPendiX: Questionnaire
Note: In the web-based survey, one item per page was shown. Respondents were able to review and change previous answers by using a Back button. The questionnaire was translated one-way only by the authors, for the purpose of this manuscript.
satisfaction with treatment in the past
1. How satisfied are you with your treatment in the past?
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
satisfaction with current treatment
The following 6 questions concern your satisfaction with your current treatment.
2. How satisfied are you with your current treatment?
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
Characteristics of satisfaction
Your satisfaction with your treatment depends on multiple characteristics. For example, the effectiveness, safety, convenience, doctor-patient communication, information provision and organization of treatment. The following questions concern those characteristics.
3. How satisfied are you with the effectiveness of your current treatment?
You may think of:
• decrease of skin complaints such as scaling, thickness of skin, redness, pain sensitivity, itch and affect-ed areas;
• how long does it take until improvement occurs, and how long does this improvement persist; • improvement of your quality of life, for example your mood, your vitality, how much time you are able to
spend on working, hobbies or social contacts.
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
3
4. How satisfied are you with the safety of your current treatment?You may think of:
• the risk of side effects of the treatment
• the risk to develop other diseases/complaints due to the treatment
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
5. How satisfied are you with the convenience of your current treatment?
You may think of the ease of application and the amount of time this takes.
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
6. How satisfied are you with the information provision about your current treatment?
You may think about oral or written information about your treatment.
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
7. How satisfied are you with the doctor-patient communication of your current treatment?
You may think of:
• the way the doctor takes the decision to start the treatment • the contact with the doctor during the treatment
• the attitude of the doctor
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in be-tween.
Not at all satisfied Very satisfied
1 2 3 4 5
treatment satisfaction in general
8. How satisfied are you with your overall received treatment?
Please tick the number of your choice. 1=not at all satisfied, 5=very satisfied. Numbers 2, 3 en 4 are in between.
Not at all satisfied Very satisfied
1 2 3 4 5
Characteristics of satisfaction
Your satisfaction with treatment depends on several characteristics. Some examples we mentioned before are effectiveness, safety, convenience, doctor-patient communication, information provision, organization of treat-ment. We are curious how important those characteristics are to you in choosing a treattreat-ment. In answering the following question, please note that it concerns your opinion in general, not only your current treatment.
9. how important are those characteristics in general to you in choosing a treatment?
You have 10 points to divide. Please divide those over the characteristics. The more important a
characteristic is in your opinion, the more points you give. If a characteristic is not important at all in your opin-ion, you give it zero points.
number of points effectiveness
You may think of:
• decrease of skin complaints such as scaling, thickness of skin, redness, pain sensitivity, itch and affected area;
• how long does it take until improvement occurs, and how long does this improvement persist;
• improvement of your quality of life, for example your mood, your vitality, how much time you are able to spend on working, hobby's or social contacts.
safety
You may think of the risk of side effects of the treatment, the risk to develop other diseases/com-plaints due to the treatment.
convenience
You may think of the ease of application and the amount of time this takes.
information provision
You may think about oral or written information about your treatment.
doctor-patient communication
You may think of the way the doctor chooses for a particular treatment, in dialogue with you, the contact with your doctor during the consultations, the doctor's attitude or how he/she treats you.
organization of treatment
You may think of the way of treatment (outpatient clinic, daycare center, in hospital or at home), the administration and how counter employees and other personnel (e.g. nurses) treat you dur-ing the treatment, possible waitdur-ing times.
