| Name of the Instrument/Tool | Lupus quality of life (LupusQoL) |
| First Description |
McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, et al. Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Rheum 2007;57:972-9 |
| Year | 2007 |
| Domains | |
| Concept of constructs | Health related quality of life |
| Population/Disease | Disease specific |
| Originally developed for | Systemic Lupus Erythematosus (SLE) |
| Other rheumatic diseases where can be applied (only if validated) |
--- |
| Additional population with no rheumatic diseases |
No |
| Language: Originally published in | English |
| Available in Language | English |
| REFERENCE IDENTIFICATION | |
| Author/s | McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, et al |
| Title | Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus |
| Journal | Arthritis & Rheumatism |
| Year | 2007 |
| Vol | 57 |
| Num | 6 |
| Pages | 972-979 |
| Country | UK |
| Language | English |
| Other references of interest | |
| Link | http://ard.bmj.com/content/69/01/29.long |
| Brief Description |
Patient-reported outcomes are valuable for the management of chronic diseases like systematic lupus erythematosus (SLE), but no measures have been validated for use in US-based patients with SLE.
Data provide evidence to support the psychometric properties of the LupusQoL-US, suggesting its utility as an assessment tool for patients with SLE in the USA.
|
| Instrument/Tool Translations References | |
| Link | https://www.ncbi.nlm.nih.gov/pubmed/?term=Adaptation+and+val … |
| Brief Description |
Adaptation and validation of the Spanish version of a disease-specific quality of life measure in patients with systemic lupus erythematosus: the Lupus quality of life |
| DEVELOPER CONTACT INFORMATION | |
| Correspondence to | Lee-Suan Teh |
| lsteh@btinternet.com | |
| Address | Department of Rheumatology, Level 1 Room S1615, Royal Blackburn Hospital, Haslingden Road, Blackburn BB2 3HH |
| Website | --- |
| Available | All right reserved. Please contact the developer |
| Links | --- |
| DESCRIPTION OF THE INSTRUMENT | |
| Type Of Measure | Questionnaire |
| Brief Description |
Questionnaire to evaluate quality of life. Derivation of items for this questionnaire was performed by patient interview. The patients were asked for their perspective on the ways in which the disease and treatment impacted their life. |
| Number of Items | 34 questions |
| Range | 0 (worst HRQOL) to 100 (best HRQOL) |
| Responses options/scale |
Yes burden to others (3 items). |
| Developed for | Both |
| PRACTICAL APPLICATION | |
| Method of administration | Self-administered |
| Recommendations to score |
LupusQoL has a 5-point Likert response format, where 0 =all of the time, 1 =most of the time, 2 =a good bit of the time, 3 =occasionally, and 4 =never. Item response scores are totaled for each domain (physical health, emotional health, body image, pain, planning, fatigue, intimate relationship, burden to others) and the mean raw domain score is obtained by dividing the total score by the number of items in that domain. The mean raw domain score is transformed to scores ranging from 0 to 100 by dividing by 4 (the number of Likert responses [5 responses] minus 1) and then multiplying by 100. |
| Score Interpretation | The lower the worst quality of life |
| Cut-off points | --- |
| Cut-off points applied to | Not specified |
| Smallest detectable change if described | --- |
| Smallest detectable change applied to | Not specified |
| Completion time by the patient | 10 minutes |
| Scoring time by the assessor | 5 minutes |
| Training to score | Not necessary |
| Strengths | Useful in clinical practice & research |
| Limitations | Lengthy |
| OTHER COMMENTS | |
| Other Comments |
Men were not involved in the early stages of questionnaire development Needs further cultural adaptation |