Table 1 Overview of included studies

James (2009) [24], UK

Autobiographical narrative

N=1 with AS (Men 100%)

Man in his 50s

Symptom duration: since 11 years

N/A

A personal account of living life with AS

Thompson (2011) [25], UK,

NASS and three rheumatology departments.

Mixed methods study including qualitative focus group and interviews

N=8 with AS^a (Men 50%)

Age: range 28-71 years

Disease duration: NS

Content analysis

To understand the educational needs of people with AS

N=22 with AS^b (Men 77%)

Age: 38.7 years (mean)

Disease duration: NS

Barlow (1999) [26], UK,

NASS and volunteers from research centre or Arthritis Care

Mixed method study including questionnaire with open-ended questions and qualitative focus groups

N=145 with AS (Men 68%)^c

Age: 51.4 years (mean)

Disease duration: 25.05 years (mean)

N=NS with arthritis, mostly RA and AS^a

Age: NS

Disease duration: NS

Content analysis

To examine perceptions of parenting in mothers, fathers and grandparents with arthritis

Haugli (2004) [27],

Norway, In-patients in a rehabilitation centre

Qualitative focus groups

N= 12 with RA or AS^c (Male 33%)

Age: range 20-80 years

Disease duration: range 1-30 years

Thematic analysis

To explore the doctor-patient relationship in patients with rheumatic disease

Madsen (2015) [28], Denmark,

Outpatient rheumatology clinic

Qualitative interviews

N=13 with AS (Men 100%)

Age: 44 years (median)

Disease duration: 12 years (median)

Content analysis

To understand men’s experiences of living with AS

Primholdt (2017) [29], Denmark, Rheumatology hospital department

Qualitative interviews

N=5 with AS (Men 100%)

Age: range 21-37 years

Disease duration: range 1-5 years

Meaning condensation

To explore younger men’s experiences of living with AS

Stockdale (2008) [30], UK

Rheumatology department

Qualitative interviews

N=8 with AS (Men 100%)

Age: 46.1 years (mean)

Disease duration: 18.8 years

Thematic analysis

To explore the impact of taking anti TNFα therapy in patients with AS

Bagcivan (2015) [31], Turkey,

Hospital rheumatology outpatient clinic

Qualitative interviews

N=23 with AS (Men 70%)

Age: 29.65 years (mean)

Disease duration: 5.39 years (mean)

Thematic analysis

To explore the experience of pain in patients with AS

Davies (2013) [32], UK,

Patient population in Wales

Qualitative focus groups

N=14 with AS (Men 50%)

Age: 53 years (mean)

Disease duration: 29 years (mean)

Thematic analysis

To explore the effect of fatigue in patients with AS

Mengshoel (2010) [33], Norway,

Rehabilitation center or self-referral

Qualitative interviews

N=12 with AS (Men 33%)

Age: range 30-59 years

Disease duration: range 6 months -36 years

Thematic analysis

To examine the nature of fatigue and how it is managed in patients with AS

Brophy (2002) [34], UK,

Residential management programme

Qualitative group discussion

N=214 with AS (Men 79%)

Age: 47 years (mean)

Disease duration: 25 years (mean)

Content analysis

To examine patient perspectives of disease flare

Cury (1995) [35], Brazil,

Outpatient rheumatology clinic

Qualitative focus groups

N=15 with AS (Men 100%)

Age 32.6 years (mean)

Disease duration: 13.4 years (mean)

Content analysis

Understanding of the origin and management of AS

Lacaille (2007) [36], Canada,

Arthritis treatment programme and rheumatology private practices

Qualitative focus groups

N=5/36 with AS (NS)

Age: NS

Disease duration: NS

Descriptive analysis

To understand patients experiences at work in relation to their inflammatory arthritis

Barlow (2001) [37], UK,

Rheumatology outpatient clinics and members of NASS

Mixed methods study including questionnaire with open-ended questions and qualitative interviews

N=133 with AS (Men 73%)

Age: 49 years (mean)

Disease duration: 28 years (mean)

Thematic analysis

To examine the meaning and perceived impact of work disability in patients with AS

Farren (2013) [38], UK,

Physiotherapy or MDT AS clinics

Qualitative diary-interviews

N=10 with AS (Men 60%)

Age: range 28-66 years

Disease duration: range 10-35 years

Framework analysis

To understand patient experiences of fatigue

Hamilton-West (2009) [39], UK,

NASS

Open-ended questoinnaire

N=68 with AS (Men 66%)

Age: 52 years (mean)

Disease duration: 15 years (mean)

Content analysis

To understand patient perspectives of the implications of AS.

O’Dwyer (2016) [40], UK,

Rheumatology outpatient clinic and national patient support groups

Qualitative interviews

N=17 with AS (Men 53%)

Mean age 39.3 (SD 9.5)

Symptom duration: 12 years

Thematic analysis

To understand patients with AS attitudes towards physical activity and exercise

Stockdale (2014) [41], UK,

Hospital rheumatology department

Qualitative interviews

N=20 with AS (Men 90%)

Age: range 25-75 years

Disease duration: range 3-36 years

Thematic network analysis

To explore the effects of anti-TNFα medication on exercise behaviour in patients with AS

Cinar (2014) [42], Turkey,

Hospital rheumatology outpatient clinic

Mixed methods study using a descriptive questionnaire

N=101 with AS (Men 94%)

Age: 36.55 years (mean)

Disease duration: 12.36 years (mean)

Thematic analysis

To explore views about anti TNFα therapy in patients with AS

Connolly (2019) [43], Ireland,

Hospital AS clinic

Mixed methods study including qualitative interviews

N=19 with AS (Men 68%)

Age: 46.7 years (mean)

Disease duration: NS

Content analysis

To explore experiences of fatigue and management strategies in patients with AS.

Brophy (2013) [44], UK,

Residents in one Health Board in Wales

Mixed methods study using a questionnaire with open-ended questions

N=348 with AS^e (Men 71%)

Age: NS

Disease duration: NS

Thematic analysis

To explore patient experience of fatigue and personal management strategies.

Boonen (2009) [45], The Netherlands,

Outpatient rheumatology clinic

Qualitative focus groups

N=19 with AS (Men 74%)

Age: 54 years (mean)

Disease duration: 18.7 years (mean)

Meaning condensation

To explore concepts important for functioning in patients with AS

Martindale (2014) [46], UK,

Two rheumatology departments.

Qualitative interviews

N= 10 with axSpA (Men 70%)

Age: 40.2 years (mean)

Symptom duration: 10.1 years (mean)

Interpretive phenomenological analysis

To explore the journey to diagnosis of people with axSpA

Berenbaum (2014) [47], France,

Hospital and community-based rheumatology services.

Qualitative interviews

N=23/25 with axSpA (Men 48%)^d

Age: ≥35 years (28%); 36 to 45 years (28%); 46 to 55 years (24%); >55 years (20%)

Disease duration: <2 years (24%), 2-5 years (24%), 6-10 years (24%), > 10 years (28%)

Thematic analysis

To explore beliefs and fears about RA and SpA and about treatment of these diseases

Raybone (2019) [48], UK,

axSpA-specific charity

Qualitative interviews

N=9 with axSpA (Male 33%)

Age: 42.4 years (mean)

Disease duration: NS

Thematic analysis

To explore the impact of AS on couple relationships

Kwan (2019) [49], Singapore,

Hospital registry

Qualitative focus groups

N=34 with axSpA (Men 59%)

Age: 41 years (median)

Disease duration: 11 years (median)

Thematic analysis

To explore Quality-of-Life domains

Hwang (2020) [50], United States,

Two clinic sites and a prior qualitative study

Qualitative interviews

N=18 with nr-axSpA (Men 33%)

Age: 46 years (Median)

Disease duration: range 3 months -15 years

Content analysis

To explore the relevance of concepts measured by the Ankylosing Spondylitis Quality of Life (ASQoL) instrument