Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study

Marshall, Nicola; Wilson, G. M.; Lapworth, K; Kay, Lesley

doi:10.1093/rheumatology/keh237

Cited by 85 publications

(86 citation statements)

References 19 publications

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“…A number of studies have addressed medication use from the patient's perspective (29)(30)(31)(32)(33)(34), including a detailed questionnaire study by Neame and Hammond (35). The current study differs from earlier investigations in several important ways.…”

Section: Discussionmentioning

confidence: 85%

Resistance of rheumatoid arthritis patients to changing therapy: Discordance between disease activity and patients' treatment choices

Wolfe

Michaud

2007

Arthritis & Rheumatism

116

117

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Objective. Despite advances in rheumatoid arthritis (RA) treatment, patients' decisions regarding therapy often deviate from expert recommendation. This study was undertaken to investigate patients' acceptance and satisfaction with therapy, willingness to change therapy, and reasons for not changing.Methods. Participants (n ‫؍‬ 6,135) completed an 11-item questionnaire concerning treatment preferences. Eight questions assessed reasons for not wanting to change therapy. The contribution of individual predictors was determined by logistic regression analysis.Results. Questionnaire responses showed that 63.8% of the patients would not want to change therapy as long as their condition didn't get worse; 77.3% were satisfied with their medications, while 9.4% were dissatisfied. These assessments were weakly related to RA activity and functional status. Side effects had occurred in 22.4% of the patients during the previous 6 months, and in 65.5% at some period during their lifetime. Predictors of unwillingness to change therapy were satisfaction with RA control, which had an odds ratio ( Conclusion. There is substantial discrepancy between declared satisfaction with therapy and measured RA activity and functional status. Most RA patients are satisfied with their therapy, even many with abnormal scores. Fear of loss of control of RA and fear of side effects are major patient concerns. Maintenance of current status, rather than future improvement, appears to be a high priority for patients.

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Section: Discussionmentioning

confidence: 85%

Resistance of rheumatoid arthritis patients to changing therapy: Discordance between disease activity and patients' treatment choices

Wolfe

Michaud

2007

Arthritis & Rheumatism

116

117

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“…ABC0010.86 44 However, the predominant observation made by participants was about the support provided by their families and friends. The different types of support included hospital visits, the understanding shown by relatives to participants' needs and their support in practical aspects of a participant's life, such as helping to plan a journey.…”

Section: Impact Of Ulcerative Colitis On Family and Friendsmentioning

confidence: 99%

“…STU008.146 44 One participant felt that the consultant treating him was quite keen that he should have surgery, but as a self-employed person he expressed concern about needing extra time off work for the initial surgery and reversal operations, saying that 'financially I can't afford to have this time off work at the moment' (RST0021.652).…”

Section: Qrs0028289mentioning

confidence: 99%

Comparison Of iNfliximab and ciclosporin in STeroid Resistant Ulcerative Colitis: pragmatic randomised Trial and economic evaluation (CONSTRUCT)

Williams

Alam

Alrubaiy

et al. 2016

Health Technol Assess

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BackgroundThe efficacy of infliximab and ciclosporin in treating severe ulcerative colitis (UC) is proven, but there has been no comparative evaluation of effectiveness.ObjectiveTo compare the clinical effectiveness and cost-effectiveness of infliximab and ciclosporin in treating steroid-resistant acute severe UC.MethodBetween May 2010 and February 2013 we recruited 270 participants from 52 hospitals in England, Scotland and Wales to an open-label parallel-group, pragmatic randomised trial. Consented patients admitted with severe colitis completed baseline quality-of-life questionnaires before receiving intravenous hydrocortisone. If they failed to respond within about 5 days, and met other inclusion criteria, we invited them to participate and used a web-based adaptive randomisation algorithm to allocate them in equal proportions between 5 mg/kg of intravenous infliximab at 0, 2 and 6 weeks or 2 mg/kg/day of intravenous ciclosporin for 7 days followed by 5.5 mg/kg/day of oral ciclosporin until 12 weeks from randomisation. Further treatment was at the discretion of physicians responsible for clinical management. The primary outcome was quality-adjusted survival (QAS): the area under the curve (AUC) of scores derived from Crohn’s and Ulcerative Colitis Questionnaires completed by participants at 3 and 6 months, and then 6-monthly over 1–3 years, more frequently after surgery. Secondary outcomes collected simultaneously included European Quality of Life-5 Dimensions (EQ-5D) scores and NHS resource use to estimate cost-effectiveness. Blinding was possible only for data analysts. We interviewed 20 trial participants and 23 participating professionals. Funded data collection finished in March 2014. Most participants consented to complete annual questionnaires and for us to analyse their routinely collected health data over 10 years.ResultsThe 135 participants in each group were well matched at baseline. In 121 participants analysed in each group, we found no significant difference between infliximab and ciclosporin in QAS [mean difference in AUC/day 0.0297 favouring ciclosporin, 95% confidence interval (CI) –0.0088 to 0.0682;p = 0.129]; EQ-5D scores (quality-adjusted life-year mean difference 0.021 favouring ciclosporin, 95% CI –0.032 to 0.096;p = 0.350); Short Form questionnaire-6 Dimensions scores (mean difference 0.0051 favouring ciclosporin, 95% CI –0.0250 to 0.0353;p = 0.737). There was no statistically significant difference in colectomy rates [odds ratio (OR) 1.350 favouring infliximab, 95% CI 0.832 to 2.188;p = 0.223]; numbers of serious adverse reactions (event ratio = 0.938 favouring ciclosporin, 95% CI 0.590 to 1.493;p = 0.788); participants with serious adverse reactions (OR 0.660 favouring ciclosporin, 95% CI 0.282 to 1.546;p = 0.338); numbers of serious adverse events (event ratio 1.075 favouring infliximab, 95% CI 0.603 to 1.917;p = 0.807); participants with serious adverse events (OR 0.999 favouring infliximab, 95% CI 0.473 to 2.114;p = 0.998); deaths (all three who died received infliximab;p = 0.247) or concomitant use of immunosuppressants. The lower cost of ciclosporin led to lower total NHS costs (mean difference –£5632, 95% CI –£8305 to –£2773;p < 0.001). Interviews highlighted the debilitating effect of UC; participants were more positive about infliximab than ciclosporin. Professionals reported advantages and disadvantages with both drugs, but nurses disliked the intravenous ciclosporin.ConclusionsTotal cost to the NHS was considerably higher for infliximab than ciclosporin. Nevertheless, there was no significant difference between the two drugs in clinical effectiveness, colectomy rates, incidence of SAEs or reactions, or mortality, when measured 1–3 years post treatment. To assess long-term outcome participants will be followed up for 10 years post randomisation, using questionnaires and routinely collected data. Further studies will be needed to evaluate the efficacy and effectiveness of new anti-tumour necrosis factor drugs and formulations of ciclosporin.Trial registrationCurrent Controlled Trials ISRCTN22663589.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 20, No. 44. See the NIHR Journals Library website for further project information.

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“…[22,23]). A few studies have, in addition, related those findings to the HAQ, such as highlighting how context affects HAQ relevance [11], as discussed in Unnecessary items; noting the floor effect [12] as presented in Missing items; or seeing the HAQ as a mere representation of more complex activities [13], as shown in Capturing holistic perspectives.…”

Section: The Literature Provides a Similar Picture Of Haq Deficienciesmentioning

confidence: 99%

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

Ebbevi

Essén

Forsberg

2017

Preprint

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Background. The Stanford Health Assessment Questionnaire-Disability Index (HAQ) is widely used to measure functional ability in persons with Rheumatoid Arthritis (RA). The instrument was developed with limited involvement from persons with RA, and their perception of the instrument has not been studied in depth. The aim of this study was to explore how persons with RA experience the use of the HAQ in care.Methods. Forty persons with RA were purposefully recruited to participate in semi-structured interviews. The interviews were then analyzed qualitatively using thematic analysis.Results. The participants questioned the relevance of the HAQ but nevertheless experienced that the instrument had a profound effect on their understanding of health and how care is delivered. The analysis resulted in three themes: Problems with individual items, meaning of the summative score, and effects on care and health perceptions. Conclusions.To make the HAQ relevant to persons with RA, it needs to be revised or to include an option to select items most meaningful to the respondent. To ensure relevance, the HAQ update should preferably be cocreated by researchers, clinicians and persons with RA.

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Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study

Cited by 85 publications

References 19 publications

Resistance of rheumatoid arthritis patients to changing therapy: Discordance between disease activity and patients' treatment choices

Resistance of rheumatoid arthritis patients to changing therapy: Discordance between disease activity and patients' treatment choices

Comparison Of iNfliximab and ciclosporin in STeroid Resistant Ulcerative Colitis: pragmatic randomised Trial and economic evaluation (CONSTRUCT)

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

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