Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference

Dür, Mona; Coenen, Michaela; Stoffer, Michaela; Fialka‐Moser, Veronika; Kautzky‐Willer, Alexandra; Kjeken, Ingvild; Drăgoi, Răzvan; Mattsson, Malin; Boström, Carina; Smolen, Josef S.; Stamm, Tanja

doi:10.1186/s12955-015-0214-8

Cited by 19 publications

(12 citation statements)

References 79 publications

(54 reference statements)

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“…These studies mainly illustrated patients' perceptions of existing items rather than investigating which functional aspects patients would find relevant to measure. Several qualitative studies mentioned limitations of the HAQ from the patient's perspective [10][11][12][13]. However, these studies did not have the specific aim to explore the HAQ and, consequently, did not show how patients experienced the instrument or what consequences the use of the HAQ may generate.…”

Section: Introductionmentioning

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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Section: Introductionmentioning

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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“…In rheumatoid arthritis, loss of function is seen in daily life due to symptoms such as degeneration, pain, swelling in joints, morning impairment, and fatigue based on joint inflammation [46]. In addition, especially effects on hand joints of rheumatoid arthritis also influence independence by causing problems in the individual's daily life activities [47,48].…”

Section: Living With Rheumatoid Arthritismentioning

confidence: 99%

Arthritis/Rheumatoid Arthritis

Ağce¹,

Özkan²,

Köse³

2017

Occupational Therapy - Occupation Focused Holistic Practice in Rehabilitation

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Rheumatoid arthritis is a progressive, chronic, and degenerative disease that adversely affects the quality of life of individuals. Depending on the individual's symptoms of rheumatoid arthritis, basic and instrumental daily life activities are restricted, and participation of life is adversely affected. Occupational therapy interventions for rheumatoid arthritis rehabilitation include self-management programs (e.g., arthritis self-management program, bone up on arthritis, self-management arthritis treatment physical activity), splinting techniques for rheumatoid arthritis, and vocational rehabilitation. In this chapter, updated information about these approaches is brought together and presented to the reader.This chapter focuses on the rheumatoid arthritis and influences person's life. Rheumatoid arthritis (RA) prevalence ranges from 0.3 to 1% of the adult population, and female-to-male prevalence ratio was 4:1 [10,13,14]. It is related to low-and middle-income countries [10,15,16].Rheumatoid arthritis affects people's life balance and their ability to perform work, leisure, self-care, and rest and sleep decreased [17][18][19]. In addition, they lose values of activity for their life so feel anxious and depressed and influence their health related quality of life [20][21][22].Occupational therapist works with not only pain or symptoms management in rheumatoid arthritis but also the prevention of functional limitations and adaptation to lifestyle changes improve emotional state and social participation to maintain independence in daily living activities [11,19,23]. Occupational therapy (OT) interventions especially focus on improving occupational performance which is negatively affected by rheumatoid arthritis. For this reason, occupational therapists use some approaches for improving occupational performance such as using behavioral change approach, energy conservation approach, relax renovation and pain control, fatigue management, maintain ındependence, adaptive device, and home adaptations in rheumatoid arthritis [9,24].

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“…Rheumatoid arthritis (RA) is an inflammatory autoimmune disease characterised by chronic joint inflammation, which leads to pain, stiffness, function loss, and fatigue [1][2][3]. All of the mentioned complaints can be measured with patient-reported outcome measures (PROMs) like the visual analogue scale (VAS), the Likert scale, the verbal rating scale (VRS) and the numerical rating scale (NRS) [4][5][6].…”

Section: Introductionmentioning

confidence: 99%

Comparison of the construct validity and reproducibility of four different types of patient-reported outcome measures (PROMs) in patients with rheumatoid arthritis

Renskers¹,

Uden²,

Huis³

et al. 2018

Clin Rheumatol

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Patient-reported outcome measures (PROMs) are increasingly used in the assessment of patients with rheumatoid arthritis (RA). The aim of this study was to assess the construct validity and reproducibility of four types of PROMs (numerical rating scale (NRS), visual analogue scale (VAS), verbal rating scale (VRS), and Likert scale). In addition, patients' preference for one of these PROMs was measured. Patients with stable RA and no change in pain medication or steroid medication (n = 211) were asked to complete a questionnaire directly following, and 5 days after their outpatient visit. The questionnaire measured the validity of the PROMs in four domains (pain, fatigue, experienced disease activity, and general well-being). To assess construct validity, Pearson correlation coefficients were calculated using the Disease Activity Score-3. To assess reproducibility, intraclass correlation coefficients (ICCs) were calculated. Correlation coefficients between the different PROMs within each domain were compared. There were no differences regarding construct validity between the different PROM scale types. Regarding reproducibility, VAS and NRS scored better in the domains pain and experienced disease activity. Patients chose NRS as preferred measurement method, with the VAS in second place. The four scale types of PROMs appeared to be equally valid to assess pain, fatigue, experienced disease activity, and general well-being. VAS and NRS appeared to be more reliable for measuring pain and experienced disease activity. The patients favoured NRS. In combination with other practical advantages of NRS over VAS, we do advise the NRS as the preferred scale type for PROMs.

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Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference

Cited by 19 publications

References 79 publications

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

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

Arthritis/Rheumatoid Arthritis

Comparison of the construct validity and reproducibility of four different types of patient-reported outcome measures (PROMs) in patients with rheumatoid arthritis

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