Living with arthritis—what is important?

McPherson, Kathryn; Brander, P; Taylor, William J.; McNaughton, Harry

doi:10.1080/09638280110049919

Cited by 54 publications

(9 citation statements)

References 42 publications

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“…However, in a study of secondary care patients, 80% of patients tend to choose a ‘collaborative’ or ‘passive’ (rather than ‘active’) role in decision making [9]. A study on living with arthritis describes a spectrum of patient preference between taking charge and not taking charge [20]. Our findings are in accordance with this theory, with many patients wanting only a limited amount of information.…”

Section: Discussionsupporting

confidence: 75%

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”

Arkell¹,

Ryan²,

Brownfield³

et al. 2013

BMC Musculoskelet Disord

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BackgroundAnti-tumour necrosis factor (anti-TNF) therapies are an important recent development in the treatment of autoimmune disease. Despite important side effects relating to immune suppression, there is lack of research into patient experiences, attitudes and expectations about the information they receive prior to starting anti-TNF therapy.MethodsIn May 2011 participants were purposively sampled to form two focus groups varying in age, anti-TNF agent and pre-therapy disease activity. A semi-structured topic guide was used to explore patients’ experiences regarding the information they received prior to commencing anti-TNF therapy. The focus groups were audio-taped and transcribed verbatim. Data were analysed using content analysis.ResultsFour key themes were identified.Firstly, weighing the risks and benefits of anti-TNF therapy. However, most participants attached limited importance to side effects, saying their strong desire for RA symptom control was overriding. Two reported deliberately concealing illness in order to continue their medication.Secondly, the desire for information. They suggested that counselling should occur at an early stage and not during a severe RA flare-up.Thirdly, the process of starting anti-TNF. Many identified that their biggest worry was whether they would be eligible for the new medication. They remembered little about the investigations they underwent, and none said they would have objected to being tested for blood borne viruses.Finally, the experience of being on anti-TNF. Most were positive, describing effects on quality of life as well as symptoms.ConclusionsThe use of qualitative methodology in this study has enabled an understanding of patients’ attitudes towards receiving information about anti-TNF therapy. The results may be useful to health professionals in terms of the timing and content of the information given to patients prior to commencing anti-TNF therapy.

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Section: Discussionsupporting

confidence: 75%

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”

Arkell¹,

Ryan²,

Brownfield³

et al. 2013

BMC Musculoskelet Disord

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“…This agreed well with another study where external factors like employment and having financial support were important to secure health. External factors were strongly linked to the perceptions of normality [40]. There is an association between work disability and RA.…”

Section: Discussionmentioning

confidence: 99%

Factors promoting health-related quality of life in people with rheumatic diseases: a 12 month longitudinal study

Arvidsson

Fridlund

et al. 2011

BMC Musculoskelet Disord

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BackgroundRheumatic diseases have a significant adverse impact on the individual from physical, mental and social aspects, resulting in a low health-related quality of life (HRQL). There is a lack of longitudinal studies on HRQL in people with rheumatic diseases that focus on factors promoting HRQL instead of risk factors. The aim of this study was to investigate the associations between suggested health promoting factors at baseline and outcome in HRQL at a 12 month follow-up in people with rheumatic diseases.MethodsA longitudinal cohort study was conducted in 185 individuals with rheumatic diseases with questionnaires one week and 12 months after rehabilitation in a Swedish rheumatology clinic. HRQL was assessed by SF-36 together with suggested health factors. The associations between SF-36 subscales and the health factors were analysed by multivariable logistic regressions.ResultsFactors predicting better outcome in HRQL in one or several SF-36 subscales were being younger or middle-aged, feeling painless, having good sleep structure, feeling rested after sleep, performing low effort of exercise more than twice per week, having strong sense of coherence (SOC), emotional support and practical assistance, higher educational level and work capacity. The most important factors were having strong SOC, feeling rested after sleep, having work capacity, being younger or middle-aged, and having good sleep structure.ConclusionsThis study identified several factors that promoted a good outcome in HRQL to people with rheumatic diseases. These health factors could be important to address in clinical work with rheumatic diseases in order to optimise treatment strategies.

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“…Cronbach’s Alpha coefficient was used to determine the internal reliability of the outcomes overall (24). Principal Component Analysis (PCA) using a Direct Oblimin rotation on the importance scores (1-5) was used to explore the data for factors or groupings of outcomes that tended to be rated in similar ways (24). PCA was also used to indicate the multidimensionality of the final RAPP-PI core set.…”

Section: Methodsmentioning

confidence: 99%

“…Qualitative research with RA patients identified that there may be treatment outcomes important to patients that are frequently not being measured in clinical trials, such as fatigue, coping, returning to/ maintaining a normal life, and life enjoyment (1-5). A systematic review of the reporting of patient-reported outcomes (PROs) in recent pharmacological trials of RA indicated that while function, patient global assessment and pain are commonly reported (in 83%, 61% and 56% of the 109 studies reviewed), outcomes such as fatigue, coping, and sleep disturbance are not (6).…”

Section: Introductionmentioning

confidence: 99%

Patient perspective of measuring treatment efficacy: The rheumatoid arthritis patient priorities for pharmacologic interventions outcomes

Sanderson¹,

Morris²,

Calnan³

et al. 2010

Arthritis Care & Research

140

118

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Objective. Collaboration with patients with rheumatoid arthritis (RA) highlights that outcomes important to them include fatigue, coping, and life enjoyment. However, these are not commonly measured in clinical trials. There is little evidence about which outcomes patients would prioritize, or what factors influence patients' prioritization. Our objective was to develop a complementary core set with patients to promote inclusion of their priority outcomes in pharmacologic interventions. Methods. Nominal groups were conducted with RA patients to rank 63 outcomes generated from previous in-depth interviews. A multicenter postal survey provided the final selection of core outcomes for the Rheumatoid Arthritis Patient Priorities for Pharmacologic Interventions (RAPP-PI), in which RA patients rated the importance of the priority outcomes from the nominal groups and ranked the top 6. Results. Twenty-six patients participated in 5 nominal group discussions and reduced the 63 initial outcomes to the 32 most important. A total of 254 participants in the survey ranked priority treatment outcomes to form the RAPP-PI: pain, activities of daily living, joint damage, mobility, life enjoyment, independence, fatigue, and valued activities. The 8 priorities represent 3 domains of treatment outcomes: direct impact of RA, psychosocial well-being, and function/ participation. Chi-square tests showed that disease severity, disease duration, sex, and patients' perceptions of managing, self-efficacy, and normality influenced the selection of priority treatment outcomes. Conclusion. Collaboration with patients has captured their perspectives of priority outcomes from pharmacologic interventions. Although there is some overlap with professional core outcomes, the additional use of this complementary set will give a broader evaluation of effectiveness of interventions from the key stakeholders: patients.

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Living with arthritis—what is important?

Cited by 54 publications

References 42 publications

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”

Factors promoting health-related quality of life in people with rheumatic diseases: a 12 month longitudinal study

Patient perspective of measuring treatment efficacy: The rheumatoid arthritis patient priorities for pharmacologic interventions outcomes

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