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

Author (year)

Country

Diagnosis

No. of subjects

Source of participants

Age & Gender

Aim

Study type/design

Ackerman (2013) [21]

Australia (High income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 Income^a)

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 income^a)

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 income^a)

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 income^a)

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 Income^a) [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 income^a)

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 income^a)

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

Author (year)

Country

Diagnosis

No. of participants

Source of participants

Age & Gender

Primary study aim

Study type/ design

Alten (2019) [33]

Europe/ Canada (High income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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-Income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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 income^a)

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