Patient-reported outcome (PRO) measures are an important component to assessing disease impact and therapy response in patients with psoriatic arthritis (PsA). Overall, there are few PsA-specific PROs. Most PROs used in PsA are borrowed from other diseases (eg, rheumatoid arthritis and ankylosing spondylitis) or general population PROs. PROs are used in PsA clinical trials and in the clinical management of PsA. In this review, we discuss the most commonly used PRO in PsA, including their inclusion in composite measures. Future studies may be helpful to determine the best performing PROs in patients with PsA.
Key points
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Psoriatic arthritis is a chronic and heterogeneous inflammatory arthritis associated with psoriasis.
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Patient-reported outcomes are essential in assessing health status and treatment effects in psoriatic arthritis.
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Additional studies are needed to understand what patients think is important in defining the activity of their disease.
Introduction
Psoriatic arthritis (PsA) is a chronic inflammatory arthritis associated with psoriasis. It affects people heterogeneously with a range of clinical manifestations (eg, inflammatory arthritis, dactylitis, enthesitis, spondylitis, skin psoriasis, nail disease). The disease has a significant impact on patients’ physical function, energy level, social participation, mood, and quality of life. Physician-based outcome measures do not capture the patient’s experience of the disease. Patient input in assessing disease status and the effectiveness of their treatments is an important aspect of the management of PsA. Patient-reported outcomes (PROs) give us the ability to integrate patient input in a way that is complementary to physician assessments and laboratory measures. PROs are measures of self-reported health status used to evaluate the patient’s perception of symptoms, function, and other aspects of his or her life potentially impacted by disease.
In PsA, PROs are used in clinical trials and clinical practice. PROs are key components of efficacy endpoints in clinical trials and are incorporated with physician-based measures in composite disease activity indices, including the primary outcome in PsA randomized controlled trials (RCTs), the American College of Rheumatology 20% improvement response criteria (ACR20). As a part of the OMERACT (Outcome Measures in Rheumatology Clinical Trials) PsA Core Domain Set, PROs representing patient global assessment, pain, physical function, and health-related quality of life are expected to be measured in all PsA RCTs in addition to physician assessments of joints and skin. Beyond these domains, PROs are used to capture work productivity, fatigue, psychological endpoints, and other symptoms. A wide range of PROs exist and few have been developed specifically for PsA. Most measures used in PsA have been developed for other diseases (eg, Health Assessment Questionnaire Disability index for rheumatoid arthritis, Functional Assessment of Chronic Illness Therapy-Fatigue for cancer-related anemia) or are generic and meant to assess population health (eg, Medical Outcomes Study Short Form-36 [SF-36], European Quality of Life Index-5 Dimensions [EQ-5D]). Furthermore, even fewer PROs have been developed with input from patients with PsA. Patient input into PsA outcome measures has previously been reviewed, and for most measures there has been no patient input. For a few measures, patient input has been incorporated by developing items from qualitative research among patients with PsA (Psoriatic Arthritis Quality of Life index, Psoriasis Symptom Inventory, Worst Itch-Numerical Rating Scale) or using patient research partner opinions of the relative importance of domains (Psoriatic Arthritis Impact of Disease). Measures of PsA have been reviewed previously.
In this review, we discuss PROs used in observational and interventional studies of PsA. We have organized the PROs into categories based on the domains they address.
Introduction
Psoriatic arthritis (PsA) is a chronic inflammatory arthritis associated with psoriasis. It affects people heterogeneously with a range of clinical manifestations (eg, inflammatory arthritis, dactylitis, enthesitis, spondylitis, skin psoriasis, nail disease). The disease has a significant impact on patients’ physical function, energy level, social participation, mood, and quality of life. Physician-based outcome measures do not capture the patient’s experience of the disease. Patient input in assessing disease status and the effectiveness of their treatments is an important aspect of the management of PsA. Patient-reported outcomes (PROs) give us the ability to integrate patient input in a way that is complementary to physician assessments and laboratory measures. PROs are measures of self-reported health status used to evaluate the patient’s perception of symptoms, function, and other aspects of his or her life potentially impacted by disease.
In PsA, PROs are used in clinical trials and clinical practice. PROs are key components of efficacy endpoints in clinical trials and are incorporated with physician-based measures in composite disease activity indices, including the primary outcome in PsA randomized controlled trials (RCTs), the American College of Rheumatology 20% improvement response criteria (ACR20). As a part of the OMERACT (Outcome Measures in Rheumatology Clinical Trials) PsA Core Domain Set, PROs representing patient global assessment, pain, physical function, and health-related quality of life are expected to be measured in all PsA RCTs in addition to physician assessments of joints and skin. Beyond these domains, PROs are used to capture work productivity, fatigue, psychological endpoints, and other symptoms. A wide range of PROs exist and few have been developed specifically for PsA. Most measures used in PsA have been developed for other diseases (eg, Health Assessment Questionnaire Disability index for rheumatoid arthritis, Functional Assessment of Chronic Illness Therapy-Fatigue for cancer-related anemia) or are generic and meant to assess population health (eg, Medical Outcomes Study Short Form-36 [SF-36], European Quality of Life Index-5 Dimensions [EQ-5D]). Furthermore, even fewer PROs have been developed with input from patients with PsA. Patient input into PsA outcome measures has previously been reviewed, and for most measures there has been no patient input. For a few measures, patient input has been incorporated by developing items from qualitative research among patients with PsA (Psoriatic Arthritis Quality of Life index, Psoriasis Symptom Inventory, Worst Itch-Numerical Rating Scale) or using patient research partner opinions of the relative importance of domains (Psoriatic Arthritis Impact of Disease). Measures of PsA have been reviewed previously.
In this review, we discuss PROs used in observational and interventional studies of PsA. We have organized the PROs into categories based on the domains they address.
Methods
We performed a systematic literature search on July 22, 2015, in PubMed. We included the following search terms for PsA: (“Arthritis, Psoriatic”[Mesh] OR “Psoriatic arthritis” OR “psoriatic arthropathy” OR “arthritis psoriatica” OR “arthropathic psoriasis” OR “psoriasis arthropathica” OR “psoriatic arthropathy” OR “psoriatic polyarthritis” OR “psoriatic rheumatism”) and the Oxford Patient-Reported Outcome Measurement filter (source: Oxford Department of Public Health PROM Group). We obtained 1422 entries, which were reviewed by title and abstract for inclusion. We excluded duplicates and studies specifically for children. After this review, 247 articles were retained. We performed additional searches for individual outcome measures. For each measure, we synthesized the available data on the use of the outcome measure in PsA.
Patient-reported outcomes in psoriatic arthritis studies
PROs may be disease specific or generic and may address one or more health dimensions or domains. Domains assessed by PROs used in PsA are shown in Table 1 and the most frequently used are discussed as follows. Studied measurement characteristics of PRO measurement instruments are summarized in Table 2 .
Domain | Patient-Reported Outcome |
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Pain | Pain visual analog scale |
Patient global |
|
Health-related quality of life | Medical Outcomes Study Short Form-36 Euro-Qol 5 Dimensions PsA Quality of Life Index Dermatologic Life Quality Index Ankylosing Spondylitis Quality of Life Index |
Impact of disease | Arthritis Impact Measurement Scales Psoriatic Arthritis Impact of Disease |
Disease activity | Routine Assessment of Patient Index Data Rheumatoid Arthritis Disease Activity Index Bath Ankylosing Spondylitis Disease Activity Index |
Disability and physical function | Health Assessment Questionnaire Disability Index Bath Ankylosing Spondylitis Functional Index Disabilities of Arm, Shoulder, and Hand Questionnaire |
Skin | Psoriasis Symptom Inventory Worst Itch Numerical Rating Scale |
Fatigue | Functional Assessment Chronic Illness Therapy-Fatigue Fatigue Visual Analog Scale/Numerical Rating Scale |
Productivity | Work Productivity Survey (arthritis specific) |
Patient-Reported Outcome | Population | Reliability Internal Consistency | Reliability, for Example Test-Retest | Measurement Error | Content Validity | Construct Validity | Criterion Validity | Responsiveness | Interpretability (Existence of Cutoffs) |
---|---|---|---|---|---|---|---|---|---|
Medical Outcomes Study Short Form-36 (SF-36) | General | Cronbach alpha >0.8 for all 8 scales | NR | NR | NR | Hypothesis testing based on convergent/divergent validity Structural validity of PCS and MCS dimensions with confirmatory factor analysis | NR | Area under receiver operator curve | PsA MID calculated |
Euro-Qol 5 Dimensions (EQ-5D) | General | NR | NR | NR | NR | NR | NR | NR | NR |
PsA Quality of Life Index (PsAQoL) | Psoriatic arthritis | Internal consistency 0.91 Rasch analysis: person separation index 0.93 | Test-retest reliability 0.89 | NR | Qualitative research | Hypothesis testing convergent validity | NR | NR | NR |
Dermatologic Life Quality Index (DLQI) | Dermatologic conditions | NR | NR | NR | NR | NR | NR | NR | NR |
Psoriatic Arthritis Impact of Disease (9 and 12 item) | Psoriatic arthritis | Cronbach alpha = 0.93–0.94 | Test-retest reliability at 2–10 d ICC 0.95 and 0.94 | NR | Patient prioritized domains | Hypothesis testing convergent validity | NR | Provided SRM | Preliminary values PASS = 4 MCII = 3 |
Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) | Ankylosing spondylitis | NR | NR | NR | NR | Hypothesis testing correlation with disease activity | NR | Area under receiver operator curve calculated for predicting high disease activity/change in treatment | NR |
Health Assessment Questionnaire Disability Index (HAQ-DI) | RA | NR | NR | NR | NR | NR | NR | Area under receiver operator curve calculated | PsA MID 0.131 PsA MCII 0.35 |
Disabilities of Arm, Shoulder, and Hand Questionnaire (DASH) | RA | NR | NR | NR | NR | Hypothesis testing, correlations with disease activity measures | NR | NR | NR |
Psoriasis Symptom Inventory (PSI) | Psoriasis | Cronbach alpha = 0.95–0.97 | Test- retest (0–2 wk and 2–4 wk) ICC = 0.7 and 0.87 | (psoriasis) Limits of agreement | Qualitative research | Structural validity using confirmatory factor analysis and Rasch analysis: unidimensionality Hypothesis testing correlations with BSA, SF-36 | NR | Comparison of PSI change scores w change in patient global | NR |
Functional Assessment Chronic Illness Therapy-Fatigue (FACIT-F) | Cancer | Cronbach alpha = 0.96 | Test-retest ICC = 0.95 | NR | NR | Hypothesis testing | Correlation with Fatigue Severity Scale = –0.79 | NR | No PsA MID RA MID is 4 |
Work Productivity Survey (WPS) | RA | NR | NR | NR | Literature review | Hypothesis testing | NR | Report SRM | NR |
Pain
Pain is a prevalent and debilitating symptom in arthritis. Pain assessment is part of the Outcome Measures in Rheumatology Clinical Trials core domain set and 1 of the 3 PROs in the ACR response indices. It is an outcome measure that is, uniformly collected in PsA RCTs and longitudinal studies. Pain is generally measured using a 100-mm visual analog scale (VAS) or an 11-point numerical rating scale (NRS) (range 0–10) with anchors “no pain” (left, 0) to “pain as bad as it could be” (right, 100 or 10 respectively) and a recall period of 7 days.
Psoriatic Arthritis Global Assessment Scales
As noted previously, global assessment scales are a part of the 2006 OMERACT PsA Core Domain Set and are captured in most clinical trials and as part of many composite measures. Global assessment scales are meant to measure the impact of a patient’s disease on his or her life. These questions may be phrased in slightly different ways and generally specify a time period over which to rate the effect of their disease. The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) has advocated for measuring 3 distinct global assessments that include separate skin and joint global assessments and a dual skin and joint global assessment. The skin and joint global item is formulated as follows: “In all the ways in which your PSORIASIS and ARTHRITIS, as a whole, affects you, how would you rate the way you felt over the past week?” and responses are recorded on a 100-mm VAS with anchors “Excellent” (left) and “Poor” (right). VASs are most often used in measuring a global assessment, although some have used NRS or Likert-type scales, such as the Multi-Dimensional Health Assessment Questionnaire (MDHAQ).
Health-Related Quality of Life
Although the term “health-related quality of life” (HRQL) has not been precisely defined, measures of HRQL are generally felt to measure the impact of chronic disease or therapeutic interventions on a patient’s quality of life. Self-rated health has long been shown to predict short-term and long-term mortality in the elderly after adjustment for physician assessment, comorbidities, health-service utilization, demographics, income, and life satisfaction. HRQL represents a broad concept and draws from different domains of health (such as fatigue, physical function, and emotional function) to derive a final score. The most commonly used HRQL outcome measures are generic (eg, SF-36 and EQ-5D), although some HRQL measures have been developed specifically for PsA (Psoriatic Arthritis Quality of Life [PsAQoL]). HRQL measures are often secondary efficacy endpoints in RCTs and can be incorporated into composite measures assessing the cost-effectiveness of interventions in PsA. We discuss those measures most frequently used in PsA in the following paragraphs. Other measures that are less commonly used in PsA include the Arthritis Impact Measurement Scales (AIMS and AIMS2), Ankylosing Spondylitis Quality of Life index (ASQoL), Routine Assessment of Patient Index Data (RAPID3), and the Rheumatoid Arthritis Disease Activity Index (RADAI).
The Medical Outcomes Study Short Form-36
The SF-36 was developed for use in the general population for clinical care, economic evaluations, and health surveys. It can be administered as a PRO, but also has been administered by trained individuals via telephone. Although a free version of the questionnaire (RAND-36) is available, the SF-36 is proprietary and the scoring is complex. The SF-36 questionnaire assesses the following 8 health domains on a scale of 0 to 100, with 100 being the best score: (1) limitations in physical activities (due to health problems); (2) limitations in social activities (due to physical or emotional problems); (3) limitations in usual role activities (due to physical health problems); (4) bodily pain; (5) general mental health (psychological distress and well-being); (6) limitations in usual role activities (due to emotional problems); (7) vitality (energy and fatigue); and (8) general health perceptions. Scores can also be summarized on 2 components using a population-normed T-score metric with a mean of 50 and SD of 10. These subscores are termed the Physical Component Score (PCS) and Mental Component Score (MCS). Minimal important differences for improvement in PsA were examined using Rasch analysis in one small study (20 patients with PsA starting biologic) and are estimated at 3.74 for PCS and 1.7 for MCS. Corresponding changes in a population with rheumatoid arthritis (RA) are 4.4 for PCS and 3.1 for MCS. The SF-36 is widely used in PsA RCTs as the preferred measure for HRQL due to its responsiveness with treatment.
The European Quality of Life Index-5 Dimensions
The EQ-5D is a commonly used generic quality-of-life instrument developed in Europe. It assesses mobility, self-care, usual activities, pain and anxiety/depression. The final score is calculated using a derived formula. The score ranges from –0.594 to 1, where zero is equivalent to death (and therefore patients can rate their health status as being worse than death). EQ-5D has been measured in many PsA RCTs, particularly those conducted in Europe. However, it is widely used among many different diseases and has been validated in a variety of disease states. It is frequently used in economic analyses. An advantage and disadvantage of the EQ-5D is its brevity: it is easily and rapidly completed; however, there are only 3 possible answers for each question, which contributes to a ceiling effect.
Psoriatic Arthritis Quality of Life Index
The PsAQoL is a PsA disease-specific measure of quality of life composed of 20 yes/no questions, making this a relatively easy and rapid questionnaire for completion. The items address domains including social participation, fatigue, mood, and daily activities. This instrument was developed using results from focus groups conducted among patients with PsA and subsequent item surveys with patients. The PsAQoL had excellent test-retest reliability and 2 studies have demonstrated correlation of PsAQoL with other instruments, suggesting construct validity. Additionally, the PsAQoL is sensitive to change. The PsAQoL has been adapted in additional languages for Sweden and the Netherlands. Similar to the SF-36, the PsAQoL is proprietary. Although not frequently used in clinical trials, the PsAQoL was used in the recent Tight Control in Psoriatic Arthritis (TiCOPA) trial and it is part of several candidate PsA disease activity indices (see Table 3 ).
Psoriatic Arthritis Impact of Disease
The Psoriatic Arthritis Impact of Disease (PsAID) is a measure developed by the European League Against Rheumatism (EULAR) and is composed of domains selected by an international group of patients with PsA. The PsAID is not specifically an HRQL PRO. It is instead intended for use as a patient-reported measure of disease impact on life in general. The PsAID has 2 versions: 1 with 9 domains for RCTs and 1 with 12 domains for clinical care. PsAID domains include the following: (1) pain (pain in joints, spine, and skin); (2) skin problems (including itching); (3) fatigue (being physically tired, but also mental fatigue, lack of energy); (4) ability to work/leisure; (5) functional capacity; (6) feeling of discomfort; (7) sleep disturbance; (8) anxiety, fear, and uncertainty (about the future, treatments, fear of loneliness); (9) coping (adjustment to the disease, managing, being in charge, making do with the disease); (10) embarrassment and/or shame due to appearance; (11) social participation; and (12) depression (numbers 10–12 are added to the 9-item questionnaire). The questionnaire uses a weighted scoring system (weights were derived by patient impression of importance) and has a range of 0 to 10 (higher scores are worse) with 4 being considered a patient-acceptable symptom state. The proposed Minimal Clinically Important Difference (MCID) is 3. Given that this is a relatively new measure, few studies have included the PsAID, but studies are under way to determine sensitivity to change and convergent validity.
Patient-Reported Disease Activity, Disability, and Physical Function
Patient-reported disease activity measures have been developed for RA (eg, RAPID3) and ankylosing spondylitis (AS) (eg, Bath Ankylosing Spondylitis Disease Activity Index [BASDAI]), and these measures have been extended to other rheumatologic diseases including PsA. One issue with patient-reported disease activity measures is the lack of correlation between self-reported joint counts with physician assessments in PsA. In one study, there was weak correlation for tender joints, no correlation for swollen joints, and weak to moderate correlation for damaged joints. A study in the same cohort showed discrepancies between patient and physician global assessments ; these patient-physician discrepancies were significantly associated in a multivariable regression model with scores for fatigue, pain, tender and swollen joints, and HRQL. Nevertheless, these measures may provide different and complimentary information to physician-reported measures. We discuss the most commonly used patient-reported disease activity measures in PsA trials and in the clinical management of PsA in the following sections. Additionally, we discuss PRO measures for disability and physical function, which have different meanings from disease activity. Although physical function may correlate with disease activity, disability may not.
Bath Ankylosing Spondylitis Disease Activity Index
The BASDAI was developed in patients with AS and exclusively axial disease. BASDAI is a questionnaire consisting of 6 VAS items assessing fatigue, axial joint pain, peripheral joint pan, soft tissue tenderness to touch, and severity and duration of morning stiffness. Responses are recorded on unlabeled 10-cm VAS with left and right anchor “None” and “Very severe,” except for the morning stiffness duration item, from “0” to “2 or more hours” with additional labels for 0.5, 1.0, and 1.5 hours. Score range is 0 to 10, calculated as the mean of the 6 items. BASDAI has been used in PsA with and without axial disease and scores were generally higher in the axial versus peripheral PsA phenotype. In axial PsA (grade 2 or more unilateral sacroiliitis, inflammatory back pain, and stiffness), BASDAI did not differentiate between levels of disease activity defined by change in treatment in either axial or peripheral PsA. In the Toronto PsA cohort, BASDAI showed good discriminative ability for high and low disease activity in axial PsA (similarly defined as grade 2 or more sacroiliitis, inflammatory back pain, or spinal mobility limitation). Three definitions were used for high disease activity: patient global greater than 6, physician global greater than 6, and change in treatment. BASDAI discriminative ability for high disease activity using the 3 definitions was calculated as area under the curve (AUC) (95% confidence interval): 0.92 (0.88–0.95), 0.78 (0.67–0.88), and 0.69 (0.63–0.76) respectively.
Health Assessment Questionnaire Disability Index
Health Assessment Questionnaire Disability Index (HAQ-DI) is a widely used outcome measurement instrument for disability, developed in patients with RA. HAQ-DI scores have been shown to predict future function, survival, and resource utilization in RA, and correlate with radiographic scores in RA. Total HAQ-DI score range is 0 to 3 and normal scores are 0.5 or lower. Minimal clinically important improvement (MCII) in RA has been determined to be a decrease of 0.375 in the total score (equivalent to 3 points improvement in the raw score), and very similar, a decrease of 0.35 in PsA. The HAQ-DI has been measured in every PsA RCT, as it is part of the ACR responder indices and is usually also reported as a separate endpoint. HAQ-DI has been shown to be limited by floor effect much more in PsA (30%) than RA (8%), a fact supported by a comparative review of RA versus PsA RCTs in which mean HAQ-DI scores are systematically higher in RA versus PsA. Although this may be interpreted as a lower level of disability, it may in fact be a reflection of common oligoarticular involvement with PsA.
Disabilities of Arm, Shoulder, and Hand Questionnaire
The Disabilities of Arm, Shoulder, and Hand Questionnaire (DASH) was studied in one longitudinal PsA cohort. Correlations with clinical measures of disease/joint activity were lower for the total joint core compared with upper extremity score as expected because DASH measures upper limb function. Due to common lower extremity involvement in PsA, the measure is not sufficient for assessing the construct of disability in most patients with PsA.
Skin Symptoms and Related Impact
Although a complete review of the quality-of-life and disease activity indices for skin are beyond the scope of this review, we briefly discuss those commonly included in clinical trials of PsA.
Dermatology Life Quality Index
The Dermatology Life Quality Index (DLQI) is a quality-of-life index designed for patients with skin disease. This 10-item questionnaire (with one additional item that branches) ascertains the impact of skin disease on work and leisure activities, social participation/relationships, and symptoms related to skin disease, such as itch and pain. The DLQI is widely used in clinical trials for psoriasis and PsA and correlates well with the Psoriasis Area and Severity Index. This questionnaire is easy to complete, sensitive to change, and has been validated in multiple populations, in particular psoriasis.
Psoriasis Symptom Inventory
The Psoriasis Symptom Inventory (PSI) is a recently developed PRO assessing psoriasis symptoms that can be administered on paper or electronically. Rather than an HRQL index, this can be used more as a disease activity index. The PSI was developed in people with psoriasis in the United States who participated in focus groups and interviews to generate and subsequently clarify concepts and patient-preferred terms. The PSI has 8 items assessing the severity of each of these symptoms: (1) itch, (2) redness, (3) scaling, (4) burning, (5) stinging, (6) cracking, (7) flaking, and (8) pain due to psoriasis. Item response options are a 5-point Likert type (score 0: not at all severe; 1: mild; 2: moderate; 3: severe; 4: very severe), and 2 versions exist, differing only in the recall period (24 hours and 7 days). The PSI score range is 0 to 32 with higher score representing worse symptoms. The test-retest reliability of PSI items has been studied in 139 patients with psoriasis and it was good (individual items intraclass correlation coefficients [ICCs] >0.7) as well as correlations with DLQI and SF-36 items. As expected, the highest correlations were observed with corresponding skin symptom items. The PSI was tested in 154 people, with PsA showing good test-retest reliability (total score ICC 0.7), moderate correlation with body surface area and patient global (–0.5 and 0.4, respectively) and low correlations with SF-36 concepts and physician global.
Worst Itch Numerical Rating Scale
The Worst Itch NRS was developed in patients with psoriasis (n = 22) and PsA (n = 12) and consists of a single NRS (0–10, “no itch” to “worst imaginable itch”) for itch with an assessment over the past 24 hours. The item was developed using qualitative research with patients with psoriasis and PsA followed by item cognitive debriefing.
Fatigue
Functional Assessment Chronic Illness Therapy-Fatigue
The Functional Assessment Chronic Illness Therapy-Fatigue (FACIT-F) is a 13-item PRO initially developed in patients with cancer as the Functional Assessment of Cancer Therapy and adapted for use in other chronic conditions. Score range is 0 to 52 with higher scores reflecting less fatigue. FACIT-F reliability and validity was examined in a longitudinal PsA study. Minimal important change in RA is 4 points and it has not been specifically studied in PsA.
Fatigue Visual Analog Scale
Fatigue VAS use is common especially in clinical care (including an 11-point NRS scale as a part of the MDHAQ) and longitudinal studies. Fatigue VAS has been criticized for lack of standardization because this causes great difficulty with comparisons across studies.
Work Productivity
Work productivity and work disability are related concepts. PsA is associated with increased work disability that can be reversed with treatment.
The arthritis-specific Work Productivity Survey (WPS) was developed in RA on the basis of a literature review and has data supporting its validity in PsA from one RCT. The WPS is an interviewer-administered 10-item questionnaire assessing employment status, missed workdays, productivity, and arthritis interference both in the work place and at home, with a recall period of 1 month. Two of the items are VASs with anchors “no interference” (left) and “complete interference” (right) and additional items are reports of numbers of days missed or not as productive.
Sleep Disturbance
There is evidence that PsA is associated with sleep disturbance and patients prioritized this impact in the EULAR PsAID measure, yet sleep is rarely assessed in PsA research or clinical care. The Medical Outcomes Study Sleep Scale has been used in a study of psoriasis and fibromyalgia but not specifically in PsA. The PsAID questionnaire is the only PsA-specific PRO assessing sleep disturbance as one of its domains. Further studies are needed to address optimal PROs for sleep in PsA.