| Title |
Development of the Systemic Lupus Erythematosus Steroid Questionnaire (SSQ): a novel patient-reported outcome tool to assess the impact of oral steroid treatment
|
|---|---|
| Published in |
Health and Quality of Life Outcomes, February 2017
|
| DOI | 10.1186/s12955-017-0609-9 |
| Pubmed ID | |
| Authors |
Susan D. Mathias, Pamela Berry, Jane De Vries, Anca Askanase, Katie Pascoe, Hilary H. Colwell, David J. Chang |
| Abstract |
Oral glucocorticoids (steroids) are the mainstay of treatment for systemic lupus erythematosus (SLE), but their use is often associated with short- and long-term side effects. Following a literature review and discussions with patients with SLE, clinicians, and payers, a need was identified for a comprehensive SLE-specific tool that can be used to evaluate the side effects and benefits of steroids over time from a patient perspective. The objective of this study was to develop a patient-reported outcome (PRO) measure to assess general impact (baseline burden), benefits, side effects, and impacts associated with the use of oral steroids in patients with SLE. A qualitative research protocol was developed in which adults with SLE currently receiving or who had received steroids in the past year were recruited from six US rheumatology practices to participate in concept elicitation (CE) interviews. The SLE Steroid Questionnaire (SSQ) was developed based on CE interview results and clinical input. Cognitive debriefing interviews with a second group of patients with SLE evaluated the content, clarity, and relevance of the items. The SSQ was refined using patient feedback, clinician review, and a translatability assessment. The protocol received central independent review board approval. Thirty-three patients (52% moderate disease severity; 58% currently receiving steroids, mean dose 8.7 mg/day) completed CE interviews. Patients reported benefits, side effects, and impacts from steroids. The refined SSQ contains 50 items assessing steroid dose/duration (4 items), general impact (baseline burden; 19 items), benefits (7 items), work/productivity (3 items), side effects (10 items), emotions (6 items), and overall satisfaction (1 item). The SSQ is a unique PRO, developed using robust scientific methodology in accordance with the Food and Drug Administration PRO Guidance. It was designed to comprehensively assess the patient experience with steroid therapy and better understand the benefits and burden of steroids for patients with SLE. |
X Demographics
The data shown below were collected from the profile of 1 X user who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 60 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 60 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 9 | 15% |
| Student > Ph. D. Student | 7 | 12% |
| Student > Doctoral Student | 6 | 10% |
| Student > Postgraduate | 6 | 10% |
| Student > Master | 5 | 8% |
| Other | 7 | 12% |
| Unknown | 20 | 33% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 20 | 33% |
| Nursing and Health Professions | 5 | 8% |
| Psychology | 4 | 7% |
| Pharmacology, Toxicology and Pharmaceutical Science | 3 | 5% |
| Social Sciences | 2 | 3% |
| Other | 5 | 8% |
| Unknown | 21 | 35% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 01 March 2017.
All research outputs
#17,880,829
of 22,957,478 outputs
Outputs from Health and Quality of Life Outcomes
#1,509
of 2,183 outputs
Outputs of similar age
#223,970
of 310,863 outputs
Outputs of similar age from Health and Quality of Life Outcomes
#34
of 60 outputs
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We're also able to compare this research output to 60 others from the same source and published within six weeks on either side of this one. This one is in the 1st percentile – i.e., 1% of its contemporaries scored the same or lower than it.