Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review

Palominos, Penélope Esther; Gasparin, Andrese Aline; Andrade, Nicole Pamplona Bueno de; Xavier, Ricardo Machado; Chakr, Rafael Mendonça da Silva; Igansi, F.; Gossec, Laure

doi:10.1186/s42358-018-0001-4

Cited by 26 publications

(17 citation statements)

References 64 publications

(87 reference statements)

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“…According to the 2018 update of the EULAR recommendations for the role of the nurses in the management of chronic IA (Bech et al, ), patients shall have access to a nurse for education to improve knowledge of IA and its management throughout the course of their disease. The results from this study, showing that patients' health status was stable over time, are valuable to discuss with patients in nurse consultations or in patient education, since many patients have fears related to the being chronically ill (Palominos et al, ). Also, knowing that higher self‐efficacy scores are associated with lesser psychological distress and tiredness, underline that talking to patients about how to balance their activities and energy according to their individual situations (Grønning et al, ) is needed to support patients to become good self‐managers, (Bech et.…”

Section: Discussionmentioning

confidence: 95%

“…This is good news as self‐management is shown to improve health outcomes (Stenberg et al, ) and very important to address in the treatment and care of patients with several chronic diseases (Ree, Wiig, Manser, & Storm, ; Turner et al, ). Good self‐management is also shown to limit patients' fears related to the being chronic ill (Palominos et al, ) and a theme often addressed in patient education and self‐management programmes (Hardware, Johnson, Hale, Ndosi, & Adebajo, ; Stenberg et al, ).…”

Section: Discussionmentioning

confidence: 99%

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Health status and self‐management in patients with inflammatory arthritis—A five‐year follow‐up study after nurse‐led patient education

2019

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AimThe aim of this study was to investigate changes in patients' self‐management and health status five years after nurse‐led patient education.DesignA longitudinal study.MethodsWe collected self‐reported data on physical function, pain, tiredness, disease activity, psychological status, patient activation and self‐efficacy from a sample of Norwegian‐speaking adults with inflammatory arthritis that had participated in a randomised controlled study investigating the effects of nurse‐led patient education. Changes and associations in patients' health status and self‐management were analysed with paired sample t tests and multivariable linear regression analyses, respectively.ResultsExcept from a small deterioration in patients' physical function, there were no changes in patients' health status 5 years after the nurse‐led patient education. Patients' self‐management skills were improved after 5 years. Self‐efficacy was positively associated with female gender, patient activation, less tiredness and less psychological distress.

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Section: Discussionmentioning

confidence: 95%

Section: Discussionmentioning

confidence: 99%

Health status and self‐management in patients with inflammatory arthritis—A five‐year follow‐up study after nurse‐led patient education

2019

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“…Safety as a goal of medicines information seeking is supported by consumer medicines information needs literature (39). High fear scores can reduce adherence and potentially impede clinical outcomes (40)(41)(42). In our cohort, most of the callers expressing their fear of taking the medicine resulted from reading the consumer package insert.…”

Section: Discussionmentioning

confidence: 93%

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

Masri

Hollingworth

Driel

et al. 2020

Preprint

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BackgroundDisease modifying antirheumatic drugs (DMARDs) have transformed the treatment of numerous autoimmune and inflammatory diseases but their perceived risk of harm be a barrier to use.MethodsIn a retrospective mixed-methods study, we analysed conventional (c) and biologic (b) DMARDs-related calls and compared them with rest of calls (ROC) from consumers to an Australian national medicine call center operated by clinical pharmacists from September 2002 to June 2010. This includes the period where bDMARDs became available on the Pharmaceutical Benefits Scheme, the government-subsidized prescription medicines formulary. We compared caller and patient demographics, enquiry types and motivation to information-seek for both cDMARDs and bDMARDs with ROC, using a t-test for continuous data and a chi-square test for categorical data. We explored call narratives to identify common themes.ResultsThere were 1,547 calls involving at least one DMARD. The top three cDMARD enquiry types were side effects (27.2%), interactions (21.9%), and risk versus benefit (11.7%). For bDMARDs, the most common queries involved availability and subsidized access (18%), mechanism and profile (15.8%), and side effects (15.1%). The main consumer motivations to information-seek were largely independent of medicines type and included: inadequate information (44%), wanting a second opinion (23.6%), concern about a worrying symptom (18.8%), conflicting information (6.9%), or information overload (2.3%). Question themes common to conventional and biological DMARDs were caller overemphasis on medication risk and the need for reassurance. Callers seeking information about bDMARDs generally overestimated effectiveness and focused their attention on availability, cost, storage, and medicine handling.ConclusionConsumers have considerable uncertainty regarding DMARDs and may overemphasise risk. Patients cautiously assess the benefits and risks of their DMARDs but when new treatments emerge, they tend to overestimate their effectiveness.

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“…Safety as a goal of medicines information seeking is supported by consumer medicines information needs literature [42]. High fear scores can reduce adherence and potentially impede clinical outcomes [43][44][45]. In our DMARD cohort, many callers expressing their concern of taking the medicine resulted from reading the consumer package insert.…”

Section: Discussionmentioning

confidence: 98%

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

et al. 2020

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Background: Disease-modifying antirheumatic drugs (DMARDs) have transformed the treatment of numerous autoimmune and inflammatory diseases but their perceived risk of harm may be a barrier to use. Methods: In a retrospective mixed-methods study, we analysed conventional (c) and biologic (b) DMARDs-related calls and compared them with rest of calls (ROC) from consumers to an Australian national medicine call center operated by clinical pharmacists from September 2002 to June 2010. This includes the period where bDMARDs became available on the Pharmaceutical Benefits Scheme, the government-subsidized prescription medicines formulary. We compared caller and patient demographics, enquiry types and motivation to information-seek for both cDMARDs and bDMARDs with ROC, using a t-test for continuous data and a chi-square test for categorical data. We explored call narratives to identify common themes. Results: There were 1547 calls involving at least one DMARD. The top three cDMARD enquiry types were side effects (27.2%), interactions (21.9%), and risk versus benefit (11.7%). For bDMARDs, the most common queries involved availability and subsidized access (18%), mechanism and profile (15.8%), and side effects (15.1%). The main consumer motivations to information-seek were largely independent of medicines type and included: inadequate information (44%), wanting a second opinion (23.6%), concern about a worrying symptom (18.8%), conflicting information (6.9%), or information overload (2.3%). Question themes common to conventional and biological DMARDs were caller overemphasis on medication risk and the need for reassurance. Callers seeking information about bDMARDs generally overestimated effectiveness and focused their attention on availability, cost, storage, and medicine handling. Conclusion: Consumers have considerable uncertainty regarding DMARDs and may overemphasise risk. Patients cautiously assess the benefits and risks of their DMARDs but when new treatments emerge, they tend to overestimate their effectiveness.

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Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review

Cited by 26 publications

References 64 publications

Health status and self‐management in patients with inflammatory arthritis—A five‐year follow‐up study after nurse‐led patient education

Health status and self‐management in patients with inflammatory arthritis—A five‐year follow‐up study after nurse‐led patient education

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

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