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Table 1 Included manuscripts relating to scoping review of consumer perceived other service needs related to osteoarthritis and inflammatory arthritis, including rheumatoid arthritis and other inflammatory conditions

From: Person-centred care in osteoarthritis and inflammatory arthritis: a scoping review of people’s needs outside of healthcare

Osteoarthritis
Author (year)
Country
Diagnosis No. of subjects Source of participants Age & Gender Aim Study type/design
Ackerman (2013) [21]
Australia (High incomea)
ACR criteria or radiology reports N = 126
Hip OA: 31%
Knee OA: 63%
Hip + Knee OA: 6%
Rheumatology or Orthopaedic outpatient clinic (mixed public and private hospitals) Age(median): 67 years (IQR 57–73)
Female 60%
To understand barriers to participation in community-based arthritis self-management programs and patient preferences for self-management education. Quantitative
Questionnaire
Al-Taiar
(2013) [22]
Kuwait (High incomea)
Clinical N = 39
Knee OA
Waiting list for TKJR for severe knee OA in the only public orthopaedic hospital in Kuwait Age (mean): 62.5 +/− 7.9 years
Female 100%
To explore the pain experience and mobility limitations as well as the patient’s decision making process to undertake knee joint replacement Qualitative, focus group discussions
Baumann (2007) [23]
France (High incomea)
Diagnosis methods not specified N = 96
Knee OA 66%
Finger OA 50%
Hip OA 46%
Customers of 10 pharmacies in 10 towns in 10 regions randomly selected from 22 French regions. The first 10 customers who came to purchase any medication. Age(mean): 65 years (range 42–89 years)
Female 81%
To understand the expectations of patients with OA to use these to improve healthcare provision and the doctor-patient relationship Qualitative
Focus groups
Bukhave & Huniche (2014) [24]
Denmark (High incomea)
Clinical N = 31
Hand OA
Referred by a doctor or volunteers (via an article in Danish Rheumatism Association magazine) Age(mean): 62.9 years (range 38–89 years)
Female 84%
To explore perspectives on activities and participation in everyday life among people with hand OA Qualitative, semi-structured interviews
Chan (2011) [25]
Hong Kong (High incomea)
Clinical (ACR Criteria) N = 20
Knee OA
GP clinic Age(mean): 57.05 +/− SD 10.79 years
Female 65%
To evaluate the influence of pain patterns on quality of life, and to investigate interpretation and coping strategies Qualitative, semi-structured interviews
Ilori (2016) [26]
Nigeria (Lower-Middle Incomea)
Clinical (ACR Criteria) N = 270
Knee OA
GP clinic Age: NR
Gender: NR
To assess family and social supports, and health impact on patients with knee OA Quantitative
Questionnaires
Hill (2010) [27]
United Kingdom (High incomea)
Clinical (by GP or rheumatologist) N = 29
Hand OA
GP or rheumatology outpatient clinic Age(mean): primary 62.4 years, secondary 63.6 years
Female: primary 80%, secondary 93%
To investigate the functional impact of hand OA on everyday life Qualitative:
Semi-structured interviews
Kao (2014) [28]
Taiwan (High incomea)
Stage 1 or 2 knee OA (Ahlback) N = 17
Knee OA
Orthopaedic outpatient clinic (2 hospitals) Age (mean): 49.6 +/− SD 4.2 years (range 43–55 years)
Female 82%
To understand the illness experiences of middle-aged adults with early knee OA Qualitative, semi-structured interviews
Kjeken (2013) [29]
Norway (High incomea)
Clinical (ACR Criteria) N = 125
Hand OA
Rheumatology and orthopaedic outpatient clinics (public hospital) Age(mean): 64.5 years
Female 98%
To explore self-management strategies in hand OA, especially strategies for daily activities Qualitative and quantitative
Questionnaires
Leung et al. (2019)
Singapore (High Incomea) [30]
Clinical (ACR Criteria) N = 45
Hand OA
Rheumatology outpatient clinic (dedicated hand OA clinic) Age (mean): 64.3 years (range 51–82 years)
Female 91.1%
To explore patients’ perspectives in priorities for core domains for clinical trials related to hand OA. Quantitative
Questionnaires
Neville (1999) [31]
Canada (High incomea)
Clinical N = 197
• RA: 57
• SLE: 27
• OA: 41
• Back Pain: 55
• Systemic sclerosis: 17
Rheumatology outpatient clinic (public or private, multicentre) Age(mean): 60 +/−  15 years
Female83.2%
To identify concerns & learning interests of arthritis patients Quantitative
Descriptive cross-sectional self-administered questionnaires
Tanimura (2011) [32]
Japan (high incomea)
Clinical N = 362
Knee OA
Orthopaedic outpatient clinics (predominantly public hospitals) Age (mean): 72.4 +/−  9.6 years
Female 281/362 (78%)
To develop an instrument to assess difficulties in daily life of patients with knee OA, and to investigate factors influencing difficulties in life Quantitative
Questionnaires
Inflammatory arthritis
Author (year)
Country
Diagnosis No. of participants Source of participants Age & Gender Primary study aim Study type/ design
Alten (2019) [33]
Europe/ Canada (High incomea)
Clinical N = 1231
RA
Online advertising, previous survey participants Age: most common 40–59 years (48%), 30% > 60 years, 22% < 40 years
Female 58%
To understand the impact of RA on patients’ lives. Quantitative
Questionnaires
Been-Dahmen (2017) [34]
The Netherlands (High incomea)
Not specified N = 20
• RA: 16
• PsA: 2
• AS: 2
Rheumatology outpatient department Age: most common 55–64 years (10/20; 50%), 5/20 < 55 and 5/20 65+ years.
Female 14/20 (70%)
To identify support needs of outpatients with rheumatic disorders and preferences for provision of self-management support Qualitative:
Face-to-face interviews 6/20
Focus Group interviews 14/20
Bergsten (2011) [35]
Sweden
(High incomea)
Clinical N = 16
RA
Rheumatology hospital; outpatient clinic or rehabilitation service Age (mean): Women 62 years (Range 28–82 years), Men 61 years (range 42–70 years)
Female 10/16 (62.5%)
To generate a model for how patients manage RA in everyday life Qualitative
Face-to-face interviews
Carter (2019) [36]
Australia/ New Zealand (High incomea)
Clinical N = 21
PsA with foot involvement
Rheumatology outpatient department Age (mean): 53 +/− 13 years
Female 62%
To explore how foot problems impact on the lives of people with PsA. Qualitative: semi-structured interviews
Cunha-Miranda (2010) [37]
Portugal(High incomea)
ACR Criteria N = 233
• RA
Rheumatology outpatient department Age (mean): 55.13 +/−  14.49 years
Female 82.5%
To determine principle sources of disease information in RA patients, unmet needs and patient involvement in decision making. Quantitative:
Questionnaires
Giacomelli (2015) [38]
Italy (High incomea)
Not specified N = 743
• RA:327
• PsA:214
• AS:200
Rheumatology outpatient department Age: 493 patients > 45 years of age
Female 58%
To patient involvement in medical decisions, quality of life and unmet needs after introducing biological therapies Quantitative:
Questionnaires
Hamnes (2011) [39]
Norway (High incomea)
Clinical (GP or specialist)
ACR criteria
N = 16
• RA: 8
• Fibromyalgia (FM): 8
Patients awaiting self-management programmes (SMP) Age (mean): 51.4 years
Female 13/16 (81.2%)
To identify expectations prior to a one-week self-management program, and outcomes Qualitative: Semi-structured interviews
Henchoz (2013) [40]
Switzerland (High incomea)
Clinical (Rheumatologist)
ACR functional classes I-III
N = 89
All RA
Rheumatology outpatient clinic (tertiary centre) Age (mean): 58.4 years
Women 71/89 (79.8%)
To examine patients’ perceptions of exercise benefits, barriers, and their preferences for exercise Quantitative: cross sectional study, using self-administered questionnaire
Herrera-Saray (2013) [41]
Mexico & Colombia (Both Upper-Middle-Incomea)
Disabled users of assistive devices
Not mentioned
N = 15
Inflammatory Arthritis 9/15
• RA: 4
• Spondylo-arthropathy: 5
• Amputee (any cause): 6
Rheumatologist & snow-ball method Age (mean): 41 years
Women 6/15 (40%)
To identify usage/accessibility problems faced by the disabled and users of assistive devices, and physical barriers that limit their mobility Qualitative: In-depth interviews
Kostova (2014) [42]
Switzerland (High incomea)
Clinical N = 20
All RA
Patients selected by rheumatologists as successful in dealing with implications of RA Age:
Women 13/20 (65%)
To investigation the relationship between social support and acceptance in patients with RA Qualitative
Semi-structured interviews
Kristiansen (2012) [43]
Denmark (High incomea)
Clinical N = 32
All RA
Outpatient clinics (Multicentre) Age (mean): 58.2 years
Women 19/32 (59.4%)
To explore effects of RA on everyday life Qualitative
Focus groups
Laidmae (2009) [44]
Estonia (High incomea)
Clinical N = 808
All RA
Hospitals and health centres (multicentre) Age: 66% (n = 533) over 56 years
[No range or mean age given]
Female: 687 (85%)
To investigate the impact of RA on quality of life, and the role of support and assistance from family members/acquaintances Quantitative: cross-sectional study, using self-administered questionnaire
Lempp (2006) [45]
England (High incomea)
Clinical N = 26
All RA
Rheumatology outpatient clinics (multicentre) Age(mean): 56 years
Female 22/26(84.6%)
To understand personal experiences of living with RA, and impact of RA upon patients’ lives Qualitative
Semi-structured interviews
Neville (1999) [31]
Canada (High incomea)
Clinical N = 197
• RA: 57
• SLE: 27
• OA: 41
• Back Pain: 55
• Systemic sclerosis: 17
Rheumatology outpatient clinic (public and private, multicentre) Age (mean): 60 +/− 15 years
Female 164/197 (83.2%)
To identify concerns & learning interests of arthritis patients Quantitative
Descriptive cross-sectional self-administered questionnaires
Sato (2008) [46]
Japan (High incomea)
Clinical N = 364
All RA
Commercial healthcare database services (patient records) Age (mean): 45.5 +/− 8.4 years
Female 288/364 (79.1%)
To describe the nature of benefit finding in rheumatoid arthritis including predictive social factors and impact on mental health Quantitative
Questionnaires
Strand (2015) [47]
USA/Europe (high incomea)
Clinical N = 1958
All RA
Internet survey Age (mean): 46 +/− 10.4 years
Female 100%
To identify effects of RA and the impact of goal-setting strategies Quantitative
Questionnaires (2 different surveys)
Sverker (2015) [48]
Sweden (High incomea)
Clinical (ACR criteria) N = 48
All RA
Rheumatology outpatient clinics Age 20–45: n = 9
Age 46–55: n = 11
Age 56–60 n = 18
Age 61–63: n = 10
Female 71%
To explore the experience of early RA in everyday life Qualitative
Semi-structured interviews
Thomas (2019) [49]
UK (High incomea)
Clinical N = 15 Rheumatology outpatient clinic Age (mean): 56 years (range 29–80 years)
Female: 12/15 (80%)
To explore the perspectives, experiences and strategies employed by people with RA who engage in regular physical activity. Qualitative
Semi-structured interviews
Van der Meer (2011) [50]
Netherlands (High incomea)
Clinical N = 14
All RA
Rheumatology outpatient clinic Age (mean): 47 +/−2.9 years
Female 12/14 (85.7%)
To investigate patient experiences and needs in work participation of people with RA treated with anti-tumour necrosis factor (TNF) therapy Qualitative
In-depth interviews
Wollenhaupt (2013) [51]
Germany (High incomea)
Not specified N = 318
All RA
Members of a German association for rheumatic diseases Age: 60+  63.5%
Female 83.3%
To assess quality of life as well as perceived needs and expectations for treatment and support Quantitative
Questionnaires
  1. aIncome stratification according to World Bank Country and Lending Groups 2019 Fiscal report based on Gross National Income per Capita [52]