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Baseline characteristics and patient reported outcome data of patients prescribed etanercept: web-based and telephone evaluation.

Wade AG, Crawford GM, Pumford N, Koscielny V, Maycock S, McConnachie A - BMC Med Res Methodol (2011)

Bottom Line: This manuscript describes the self-reported baseline characteristics and health-related quality of life of patients prior to treatment.A total of 344 patients/carers/parents participated in the evaluation at baseline, 290 (84%) by online questionnaire and 54 (16%) by telephone.Overall, the study population had a mean age of 53 years, was predominantly female (62%) and 20% had been previously treated with a biologic agent.

View Article: PubMed Central - HTML - PubMed

Affiliation: Patients Direct, Glasgow, UK. alan@patientsdirect.org

ABSTRACT

Background: The anti-TNF inhibitor, etanercept is administered as a once or twice weekly subcutaneous injection for the treatment of rheumatoid arthritis, psoriasis, ankylosing spondylitis, psoriatic arthritis and juvenile idiopathic arthritis (JIA). Limited data from the patients' perspective are available on the use of biologics in the treatment of these chronic conditions and this evaluation was designed to collect data from patients who had been prescribed etanercept for the first time. This manuscript describes the self-reported baseline characteristics and health-related quality of life of patients prior to treatment. Follow-up data will be reported separately.

Methods: Patients throughout the United Kingdom prescribed etanercept were invited to participate in an evaluation of their condition and treatment using a data collection tool consisting of a web-based system supplemented by telephone reporting (PROBE). Outcome measures reported at baseline included demographic data, the condition being treated, previous treatment with biologic agents and current and previous medications. Questions modified from standard, validated quality of life questionnaires such as EQ-5D were incorporated and patients made a global assessment of the severity of their own illness using the CGI-S scale.

Results: A total of 344 patients/carers/parents participated in the evaluation at baseline, 290 (84%) by online questionnaire and 54 (16%) by telephone. Overall, the study population had a mean age of 53 years, was predominantly female (62%) and 20% had been previously treated with a biologic agent. A total of 191 (56%) patients were receiving treatment with etanercept for rheumatoid arthritis, 44 (13%) for psoriatic arthritis, 43 (13%) for ankylosing spondylitis, 35 (10%) for psoriasis, 9 (3%) for known juvenile idiopathic arthritis (JIA) and 22 (6%) for another condition/patient unsure/missing response. All patients were prescribed the 50 mg weekly dose of etanercept except for 1 patient with JIA (40 mg) dose and 2 patients with psoriasis (100 mg). Thirty-eight percent of patients with rheumatoid arthritis were not receiving treatment with methotrexate.

Conclusions: The baseline characteristics and health-related quality of life of first time users of etanercept can be adequately described using self-reported patient data collected using an online questionnaire with a telephone option (PROBE).

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Related in: MedlinePlus

Pie chart of patients participating in the evaluation, by condition and reporting mode. Percentages are given to the nearest whole number. Blue: Rheumatoid arthritis - Internet Light blue: Rheumatoid arthritis - Telephone Red: Ankylosing spondylitis - Internet Pink: Ankylosing spondylitis - Telephone Dark green: Psoriatic arthritis - Internet Light green: Psoriatic arthritis - Telephone Brown: Psoriasis - Internet Orange: Psoriasis - Telephone Yellow: Juvenile idiopathic arthritis/other - Internet No colour: Juvenile idiopathic arthritis/other - Telephone.
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Figure 1: Pie chart of patients participating in the evaluation, by condition and reporting mode. Percentages are given to the nearest whole number. Blue: Rheumatoid arthritis - Internet Light blue: Rheumatoid arthritis - Telephone Red: Ankylosing spondylitis - Internet Pink: Ankylosing spondylitis - Telephone Dark green: Psoriatic arthritis - Internet Light green: Psoriatic arthritis - Telephone Brown: Psoriasis - Internet Orange: Psoriasis - Telephone Yellow: Juvenile idiopathic arthritis/other - Internet No colour: Juvenile idiopathic arthritis/other - Telephone.

Mentions: A total of 344 patients treated with etanercept responded to the invitation to participate in the baseline evaluation between April 2009 and April 2010, with 290 (84%) using the web-based mode and 54 (16%) using the telephone (Table 2). The breakdown by reporting mode and condition is shown in Figure 1. The rough estimate of uptake was 34% based on distribution of about 1,000 leaflets and assuming one leaflet per patient. However, the actual number of patients who were eligible to participate is unknown. The respondents consisted of patients (n = 331), carers (n = 6) and parents (n = 7). There was a high response rate to questions at baseline. The average response rate for questions asked of all respondents was 95% (range 93% to 100%), excluding the EQ-5D VAS question which was completed by only 46%. Original data used to perform this analysis is provided in Additional file 2.


Baseline characteristics and patient reported outcome data of patients prescribed etanercept: web-based and telephone evaluation.

Wade AG, Crawford GM, Pumford N, Koscielny V, Maycock S, McConnachie A - BMC Med Res Methodol (2011)

Pie chart of patients participating in the evaluation, by condition and reporting mode. Percentages are given to the nearest whole number. Blue: Rheumatoid arthritis - Internet Light blue: Rheumatoid arthritis - Telephone Red: Ankylosing spondylitis - Internet Pink: Ankylosing spondylitis - Telephone Dark green: Psoriatic arthritis - Internet Light green: Psoriatic arthritis - Telephone Brown: Psoriasis - Internet Orange: Psoriasis - Telephone Yellow: Juvenile idiopathic arthritis/other - Internet No colour: Juvenile idiopathic arthritis/other - Telephone.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3141801&req=5

Figure 1: Pie chart of patients participating in the evaluation, by condition and reporting mode. Percentages are given to the nearest whole number. Blue: Rheumatoid arthritis - Internet Light blue: Rheumatoid arthritis - Telephone Red: Ankylosing spondylitis - Internet Pink: Ankylosing spondylitis - Telephone Dark green: Psoriatic arthritis - Internet Light green: Psoriatic arthritis - Telephone Brown: Psoriasis - Internet Orange: Psoriasis - Telephone Yellow: Juvenile idiopathic arthritis/other - Internet No colour: Juvenile idiopathic arthritis/other - Telephone.
Mentions: A total of 344 patients treated with etanercept responded to the invitation to participate in the baseline evaluation between April 2009 and April 2010, with 290 (84%) using the web-based mode and 54 (16%) using the telephone (Table 2). The breakdown by reporting mode and condition is shown in Figure 1. The rough estimate of uptake was 34% based on distribution of about 1,000 leaflets and assuming one leaflet per patient. However, the actual number of patients who were eligible to participate is unknown. The respondents consisted of patients (n = 331), carers (n = 6) and parents (n = 7). There was a high response rate to questions at baseline. The average response rate for questions asked of all respondents was 95% (range 93% to 100%), excluding the EQ-5D VAS question which was completed by only 46%. Original data used to perform this analysis is provided in Additional file 2.

Bottom Line: This manuscript describes the self-reported baseline characteristics and health-related quality of life of patients prior to treatment.A total of 344 patients/carers/parents participated in the evaluation at baseline, 290 (84%) by online questionnaire and 54 (16%) by telephone.Overall, the study population had a mean age of 53 years, was predominantly female (62%) and 20% had been previously treated with a biologic agent.

View Article: PubMed Central - HTML - PubMed

Affiliation: Patients Direct, Glasgow, UK. alan@patientsdirect.org

ABSTRACT

Background: The anti-TNF inhibitor, etanercept is administered as a once or twice weekly subcutaneous injection for the treatment of rheumatoid arthritis, psoriasis, ankylosing spondylitis, psoriatic arthritis and juvenile idiopathic arthritis (JIA). Limited data from the patients' perspective are available on the use of biologics in the treatment of these chronic conditions and this evaluation was designed to collect data from patients who had been prescribed etanercept for the first time. This manuscript describes the self-reported baseline characteristics and health-related quality of life of patients prior to treatment. Follow-up data will be reported separately.

Methods: Patients throughout the United Kingdom prescribed etanercept were invited to participate in an evaluation of their condition and treatment using a data collection tool consisting of a web-based system supplemented by telephone reporting (PROBE). Outcome measures reported at baseline included demographic data, the condition being treated, previous treatment with biologic agents and current and previous medications. Questions modified from standard, validated quality of life questionnaires such as EQ-5D were incorporated and patients made a global assessment of the severity of their own illness using the CGI-S scale.

Results: A total of 344 patients/carers/parents participated in the evaluation at baseline, 290 (84%) by online questionnaire and 54 (16%) by telephone. Overall, the study population had a mean age of 53 years, was predominantly female (62%) and 20% had been previously treated with a biologic agent. A total of 191 (56%) patients were receiving treatment with etanercept for rheumatoid arthritis, 44 (13%) for psoriatic arthritis, 43 (13%) for ankylosing spondylitis, 35 (10%) for psoriasis, 9 (3%) for known juvenile idiopathic arthritis (JIA) and 22 (6%) for another condition/patient unsure/missing response. All patients were prescribed the 50 mg weekly dose of etanercept except for 1 patient with JIA (40 mg) dose and 2 patients with psoriasis (100 mg). Thirty-eight percent of patients with rheumatoid arthritis were not receiving treatment with methotrexate.

Conclusions: The baseline characteristics and health-related quality of life of first time users of etanercept can be adequately described using self-reported patient data collected using an online questionnaire with a telephone option (PROBE).

Show MeSH
Related in: MedlinePlus