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

Background Arthritis, regardless of cause, has significant physical, social and psychological impacts on patients. We aimed to identify the non-healthcare needs perceived by patients with inflammatory arthritis (IA) and osteoarthritis (OA), and to determine if these differ. Methods We electronically searched MEDLINE, PsycINFO, EMBASE and CINAHL (1990–2020) systematically to identify non-healthcare-related needs of people with IA or OA. All citations were screened and quality appraised by two reviewers. Data was extracted by a single reviewer. Results The search identified 7853 citations, with 31 studies included (12 for OA, 20 for IA). Six areas of need emerged and these were similar in both group These were: 1) Assistance with activities of daily living especially related to a lack of independence; 2) Social connectedness: need for social participation; 3) Financial security: worry about financial security and increased costs of health-seeking behaviours; 4) Occupational needs: desire to continue work for financial and social reasons, facilitated by flexibility of workplace conditions/environment; 5) Exercise and leisure: including limitation due to pain; 6) Transportation: limitations in ability to drive and take public transport due to mobility concerns. Many areas of need were linked; e.g. loss of employment and requiring support from family was associated with a sense of “failure” and loss of identity, as social isolation. Conclusions This review highlights the pervasive impact of arthritis on peoples’ lives, regardless of aetiology, albeit with a limited evidence base. Improved identification and targeting of non-healthcare needs of people with arthritis is likely to improve person-centred care. Supplementary Information The online version contains supplementary material available at 10.1186/s12891-021-04190-z.


Background
Arthritis affects up to 80% of older adults in developed countries [1], with the two most common forms being osteoarthritis (OA) and rheumatoid arthritis (RA). Osteoarthritis accounts for 2.19% of all years lived with disability (YLDs) for any condition worldwide; while RA accounts for 0.28% of all YLDs [2]. The management of OA is limited with no disease modifying therapy available; the focus of therapy is symptom control and maintenance of function, with joint replacement an option for end-stage disease. For people living with OA, creating a healthcare and broader social environment that supports symptom management and capabilities to effectively self-manage a long-term disease is essential [3]. In contrast, biological therapies have improved morbidity and mortality outcomes in people with inflammatory arthritis (IA), particularly (RA) [4]. With effective treatments available for controlling disease activity, medical practitioners may focus care priorities in this area and other specific health needs (e.g. co-morbidity care), rather than broader health and social needs that may be relevant to the person. Notably, in people with other rheumatologic conditions, including lower back pain, addressing needs outside of direct medical care to provide holistic care, can improve quality of life [5].
While disease management may necessarily vary between individuals, all form of arthritis are associated with common impacts on people's lives, in particular a loss of function, loss of dexterity, mental health sequelae and limitations in participation, often leading to unfavourable social consequences [6][7][8]. While these domains of impact are common, the nature of the impacts will vary between by disease. For example, those with inflammatory arthritis taking immunosuppressant medication may have specific occupational-and transportrelated needs, to avoid situations that increase their risk of infection which are not relevant to those with osteoarthritis. To optimise holistic care, it is necessary to understand peoples' non-healthcare related needs, beyond direct healthcare provision, such as the social determinants of health [9]. Accordingly, we aimed to identify current knowledge regarding the non-healthcare needs perceived by patients with OA and IA, and examine differences where identified.

Methods
A systematic scoping review was performed to provide an overview of the literature around the patient perceived non-healthcare needs of people with OA and IA, in line with the PRISMA guidelines for scoping reviews [10]. This was conducted within a larger project examining patients' perceived needs relating to musculoskeletal health [11].

Search strategy
Medline, EMBASE, CINAHL and PsycINFO were electronically searched (1990 to September 2020) using a combination of keywords and MeSH terms related to perceived non-healthcare needs in people with OA and IA separately. A comprehensive search strategy was codeveloped iteratively by a multidisciplinary team involving an academic librarian, input from a patient representative and four clinician researchers (Rheumatologists, Physiotherapist and public health physician) (Supplement Material Figures S1a, S1b, S2a, S2b, S3a, S3b, S4a, S4b).

Inclusion and exclusion criteria
English-language studies were included examining people older than 18 years with OA and IA. IA was defined as any joint disease where the primary mechanism was inflammation or synovitis, including RA, systemic lupus erythematosus (SLE) and psoriatic arthritis (PsA), excluding OA or crystal arthritis. Regarding OA, both clinical and radiological definitions were included. Studies had to report on perceived non-healthcare needs relevant to OA or IA. The concept of a "need" is complex, and currently without a consensus definition in the literature [12]. Broadly, we defined "need" in the context of health as a person's desires, expectations and requirements [12], aligned with other work in this space [11,13]. Non-healthcare services were defined as interventions, supports or structures not directly relating to healthcare, to support and assist people with functional limitation from their disease. Full text articles were included; no restrictions on study design were made to ensure a broad focus was maintained.

Study selection
Each title and abstract was screened for eligibility independently by 2 investigators (MS, SY, LC or JF). Full texts of studies meeting the inclusion criteria were retrieved and assessed (MS, LC or JF). Discrepancies were reviewed with an additional investigator (AW) to reach consensus.

Data extraction and analysis
Data were extracted by one author (MS, LC or JF) using a standardised data extraction form designed to capture demographic data, aims and description of study methods and outcomes. Included studies were reviewed by one author (MS, JF or AW) to identify aspects of non-healthcare needs, using principles of metaethnography to synthesise qualitative data [14]; the most common analytic approach for synthesising qualitative data from primary studies [15]. The principle of metaethnography is to empirically derive, though an inductive analytic frame, new concepts, interpretations, or theories that extend or go beyond findings of any individual study. In this way, a body of qualitative evidence contributes to the development of new themes or concepts [16]. The analytic approach used in this review followed the seven phases described by Noblit and Hare [17] and more recently described by France et al. [18]. Initially, one author (MS) reviewed each study in detail, reading the text several times to inductively derive an overarching framework of concepts and underlying themes from the yield of the qualitative studies. This framework was directly informed by data extracted from the primary studies and any pertinent points raised by the authors of the primary studies in the discussion, as recommended by France et al. [18]. In developing the framework of themes and subthemes each primary study was compared to the others to identify comparability, similarity or opposition based on grouping concepts. Once primary studies were translated into each other two senior rheumatologists (FC, AW) independently reviewed the framework of concepts and themes to ensure clinical meaningfulness and face validity.
Quantitative meta-analysis was not possible due to nature and heterogeneity of included studies. For this reason, quantitative data were reported narratively.

Risk of Bias assessments
Risk of bias assessments were performed independently by 2 investigators (JF, SA, AW or SY). Discrepancies were reviewed by a third investigator (AW) to reach consensus (Supplementary Material Table S1, S2). For qualitative studies, the Critical Appraisal Skills Programme (CASP) tool was used to assign risk of bias estimates [19]. For quantitative articles, the method described by Hoy et al. (Supplementary Material Appendix S1) was used to assess internal and external validity of studies [20]. Studies were deemed to be at low risk of bias if scoring eight or more "yes" answers, at moderate risk if scoring six to seven, and at high risk of bias when scoring less than six [20]. For qualitative studies, the Critical Appraisal Skills Programme (CASP) tool was used to assign risk of bias estimates [10].

Results
The search strategy identified 7853 potentially relevant abstracts, of which 891 were excluded as duplicates, and 6962 excluded after abstract screening ( Fig. 1: PRISMA Diagram). Ninety-six manuscripts were retrieved for review, with 31 included in the final review. Twelve (39%) studies related to OA, and 20 (65%) related to IA, with one study involving participants with OA and IA with outcomes reported separately. Description of the included studies is presented in Table 1.

Areas of need identified
This review identified six key areas of need in people with IA or OA, common to both groups ( Table 2,  Table 3).

1) Activities of daily living (ADLs) both inside and outside the home
Ten OA studies ( ADLs of people with OA were limited by symptoms [21,32], including pain [28]. People with OA worried about needing help from others [21,22,24,25,28,31]: 75% in one study [31]. For household chores, help was required either from within the family or external sources [22,24,25,27,28]. This sometimes contributed to a sense of "failure" to fulfil social obligations e.g. caring for children or partners [22]. People acknowledged that they may struggle to live alone [24]. Cleanliness and grooming were important to people with hand OA [24], who experienced difficulty with fine motor tasks including buttons and lacing shoes [27]. Moreover, hand OA limited the dexterity required for cell phones, cutlery and some payment systems (e.g. coins and notes) [24,27]. Gadgets with an accessible design and assistive devices improved daily functioning [24,29].
People with IA frequently received assistance with ADLs [31,34,35,39,[42][43][44][45]48]; up to 93% of people with RA [31]. Partners [42] or children [45] most commonly provided help. Participants disliked accepting assistance from children [34]. Daily activities, particularly housework, were difficult with IA [33,34,36,37,46,51]; IA was associated with less enjoyment of life [37]. Pain and stiffness contributed to functional limitations [36,48]. Functional difficulties could make people feel anxious, frustrated or "like a failure" [33]. Participants often lived alone (29%) [44] and worried about inability to obtain assistance when required [31]. Participants wanted to do more than they could [35]. Compared to amputees, people with IA were less independent and well-adjusted to their circumstances [23]. Participants wanted to tools to make ADLs easier [39], especially environmental modifications. Areas in the home, workplace and outdoors required modifications [23,40]. Participants valued security and worried about falling victim to crime due to perceived invalidity [44].   Of the OA studies, mobility restriction and lack of suitable transportation significantly limited social participation [24,25]. Inability to participant in group activities restricted social contact [24], with family activities limited to avoid excluding family members [22]. Hand OA limited participants' ability to conform to social norms [30] due to functional constraints [27], which could cause embarrassment [27]. Some participants worried about the appearance of their hands [30]. Strong social support was linked to better health perceptions [26]. Caring for grandchildren could be difficult, including limited ability to lift toddlers and change nappies [24,25]. Both doctors and support networks sometimes failed to recognise OA as a "real" disease, contributing to communication difficulties [23]. People were frustrated by a lack of community support, and underestimation of pain and suffering [32]. Media coverage of, and research into OA was perceived as inadequate [23]. One study suggested that only 20% of people with OA desired access to support groups [31].

2) Social participation needs
In people with IA, social connectedness [31, 35, 39-41, 43, 44, 48, 53] and peer support was critical. Loneliness and withdrawal were common [43,44], especially for those living alone [44]. IA put strain on personal relationships [46] particularly ability to provide care for others [48], and relationships with partners including sexual function and intimacy [33,46,47]. Some experienced lowered mood due to pain [36]. Participants were desperate for support from family and often felt "alone" [37], needing to trust others to accept proffered support [35]. This was exacerbated by limitation of social activities [36,51] and losing employment [43,45]. Barriers to social connectedness included perceived lack of understanding [33,35,36,43], financial difficulties, mobility problems and fear of falling victim to crime [44]. Overall, participants felt less able to participate in social events, community life and relationships [33,36,48]. Assistive devices made some participants feel embarrassed or "weird" [23]. Participants with PsA and foot involvement felt demoralised or stigmatised by their appearance and need for specialised footwear [36]. Participants were interested in self-help groups [31,36], which helped with coping and self-management through support, recognition and legitimisation of personal experiences and problems [39,43]. These groups facilitated participants building new relationships [39,43], and proving that normality is possible [43]. Having relatives with the same condition helped with coping [36]. Peer groups supporting physical activity were desirable [40].
OA studies focussed on the cost of health-seeking behaviour [25] and need for financial security. Work capacity was limited by disease [27,28].
In IA, financial stress was common [31,44]. Income protection was accessed by 32% [46]. Participants from Estonia described financial concerns limiting their access to basic needs including food, running water and heating, as well as sociocultural experiences [44].
People with OA wanted a flexible workplace [24,25,28] to facilitate work retention [24]. Flexibility entailed the need for regular breaks and environmental modification, although aides and environmental modifications were often not available [24]. Failure of these supports could require people to change employment [24,25,28]. Hand OA could limit work productivity [30].

ACTIVITIES OF LIVING BOTH INSIDE AND OUTSIDE THE HOME
Ackerman (2013) [21] • Cannot get out of house without assistance • Difficulties walking due to OA, limited mobility Al-Taiar (2013) [22] • Inability to do household chores, mobility limitation • Many participants have domestic helpers • "Failure" to fulfil obligation to take care of the family despite their pain/mobility limitation; feeling helpless/less valuable Bergsten (2011) [35] • Need for support from family and friends when doing household duties, personal care or everyday activities • Struggling to accept help from others; wanting to do more Bukhave & Huniche (2014) [24] • Difficulty handling small objects e.g. cutlery, glasses, gadgets, chargers, plugs and devices for connecting gadgets to power supplies, computers, cell phones (especially if buttons too small), money and payment systems (credit cards easier) • Difficulties determined by design/operation of the actual gadget • Dependency on help from others (partners most important providers of support), particularly with respect to the performing of household chores and self-care (grooming, hair dryers, buttons, tying shoes) • Singles with small networks experienced huge challenges • Need for external help at time; expensive • Importance of good grooming to participants • Special equipment, assistive devices or orthoses can improve performance; e.g. self-adapted knife Chan (2011) [25] • Reliant on support from the family or paid supports • Need to be accompanied by others when going out Hill (2010) [27] • Limited function in day-to-day activities including self-care activities 66% (cutting fingernails, drying after showering, toileting) • Difficulties with opening packaging, peeling fruit and vegetables, cutting • Limitation of hobbies/past times • Gender differences: men reported difficulties with manual work and particular hobbies (fishing, car mechanics), women reported difficulties with home-making tasks (housework, cooking) • Feelings of "frustration" at inability to do things in 55%; may lead to depression • Transitioning from normal function "taking it for granted"; loss of identify/sense of self because of being unable to do things previously done • Inability to conform to social norms due to functional constraints causing embarrassment/self-consciousness • Utility of assistive devices/adaptations to improve function and independence Kjeken (2013) [29] • Strategies to improve function in daily activities: • Assistive devices: opening packaging, cutting food • Adapting tools/materials/working techniques: e.g. facilitating lifting/carrying, housework, opening packaging • Practice activity pacing: planning daily activities and rest breaks to enable task completion • Stop or avoiding certain activities • Importance of positive thinking in completing tasks: focussing on what you can do, not pain or limitation, perseverance • Communication: ask/apply/pay for help, telling people about needs/problems Neville (1999) [31] • 75% report needing more help carrying out daily tasks • Emotional distress as well as physical limitations; difficulty communicating struggle with family or doctors • Unrecognised disability; lack of recognition by family and friends (not seeing OA as a "real" disease), community (e.g. access to disability permits), lack of OA-related research and media coverage • Importance of support from others with the same condition; "It's so nice to feel you are not the only one suffering" Bukhave & Huniche, (2014) [24] • Limited participation in activities requiring withdrawal from group activities (e.g. skiing, canoeing, dancing, woodwork and holding dinner parties) resulting in reduction of social network • Difficulty caring for grandchildren, including lifting and carrying children Chan, (2011) [25] • May have to cut down or abstain from social activities • Often limited choice of social activities depending on available transportation and walking distance • Difficulty playing with/looking after grandchildren Ilori (2016) [26] • Social support most commonly provided by children (68.8%) • Perceptions of "good health" significantly more common in those with strong support from family (69.9%) and friends • Struggle to keep working until retirement age • Some had option for flexibility in arrangements with employers; depends on individual work demands, may need to change to a job where demands match hand function • Often lack of adaptation of work environment and technical aids, and lack of knowledge concerning workplace adaptations and technical aids that could have been offered by the employer • Flexibility important Chan (2011) [25] • Impacts on work life included: tiring easily, feeling inconvenient, less efficient, need to take sick leave, need to quit job, fewer business trips / do less business • Some forced to change job/resign/early retirement Kao (2014) [28] • Need to reduce work, adjust work content and exchange work • Limitation of work due to pain Leung et al. (2019) [30] • Hand OA had a significant impact on work productivity in 33.3%

EXERCISE AND LEISURE-RELATED NEEDS
Al-Taiar (2013) [22] • Restriction of leisure activities of the whole family due to patient's disability Bukhave & Huniche (2014) [24] • Need to change/avoid exercise, replacing lost activities with more manageable ones e.g. aqua gymnastics • More sedentary/passive activities (e.g. watching TV); difficulties with many activities e.g. golf, skiing, canoeing, fishing, bicycling, gardening, knitting, sewing, and holding books while reading Chan (2011) [25] • Inability to do exercise a major concern; some needed to give up recreational/social activities altogether Kao (2014) [28] • Exercise limitation due to pain • Need to choose mode of exercise carefully and change to different activities Tanimura (2011) [32] • Incapable of pursuing hobbies/challenges 68.8% • Incapable of attending local activities 80.4%

Ackerman et al. (2013) [21]
• Transport difficulties in 22% Bukhave & Huniche (2014) [24] • Difficulty with handling the shift, holding on to the steering wheel, opening doors and the boot and handling the petrol cap of a car • Difficulty riding a bike e.g. hand brakes, shifting gears, lamps and locks • Difficulty with public transport e.g. holding on to straps or poles during exacerbating pain/other symptoms Chan (2011) [25] • Difficulty going out, particularly taking public transport; worsens with disease progression • Lack of suitable public transport facilities • Use of walking sticks Kao (2014) [28] • Did not enjoy travelling, especially getting in and out of the car • Pain an inconvenience e.g. climbing stairs, needing to look for seated toilets • Need to use analgesia prior to outings Table 3 Results of scoping review of consumer perceived other service needs related to inflammatory arthritis

ACTIVITIES OF LIVING BOTH INSIDE AND OUTSIDE THE HOME
Alten (2019) [33] • 23% of RA patients found personal grooming difficult due to pain and fatigue • Inability to complete activities made people feel anxious, frustrated or "like a failure", especially in patients > 40 years old Been-Dahmen (2017) [34] • "Nothing is as difficult as changing your lifestyle" • Extent of support required determined by disease stage, presence of symptoms and change in situation • Patients struggle to accept help; less ready to accept help from children than partners Carter (2019) [36] • Change in routine due to foot pain in PsA with needing to stop/modify activities (cleaning, shopping, cooking, gardening) • Difficulty with foot care  [39] • "Now I have to ask for an increasing amount of help and that transition is difficult" • Provision of techniques and aids that could make work and daily activities easier Herrera-Saray (2013) [23] • Amputees found to have greater independence than patients with rheumatic disease • May "get used to" new circumstances Kostova (2014) [42] • Family are most important source of support, esp. spouses and children, strong motivation to avoid becoming "passive" victim of disease and a vital source of emotional and practical support • Loss of identity because unable to do housework as previous • Difficulty with asking for help; more likely to accept help if offered spontaneously/needs anticipated rather than having to ask Kristiansen (2012) [43] • Need to set up personal and practical support in the household Laidmae (2009) [44] • Continuous vs. occasional support at home; 29% living alone Lempp (2006) [45] • Required practical help from family members for activities of daily living • Children became caregivers Neville (1999) [31] • 93% RA patients need help to carry out daily tasks Sato (2008) [46] • Difficulties at home due to RA in 18% Strand (2015) [47] • 60% difficult to perform "normal" activities due to RA; worrying about losing independence 75% • Difficulty making plans due to pain, mobility restriction and fatigue • Difficulty with housework (39%), sleeping (28%), shopping (24%), cooking (16%) Sverker (2015) [48] • Difficulties with self-care such as dressing, doing housework, gardening and shopping • Difficulties were due to pain and stiffness, and functional limitations from deformities.
Wollenhaupt (2013) [51] • Impact of RA on life rated as "rather bad" or "very bad" • Housework requiring "a lot of effort" for 23.6%; 5.2% unable to do housework, especially running errands/shopping (restriction in lifting/carrying shopping bags in 57.7%) • 60% of respondents "more or less" dependent on a third-party in day-to-day activities, usually upon partner or family/ friends

Alten (2019) [33]
• 35-39% of people reported difficulty with others understanding their disease • Negative impact on relationship with spouse or partner, including sex life and intimacy • Negative impact on inclusion in family and social events • Better understanding from others in those with a partner or children; 43% wished for better understanding of disease impact from others Been-Dahmen (2017) [34] • Trusting relationship with professionals, relatives and fellow patients • Emotional support required from relatives; however, they did not always recognise emotional issues. Partners more capable than children. • Most did not need support from fellow patients; some appreciated shared experiences. Most not interested in formal group meetings.
Bergsten (2011) [35] • Need for support from friends and family, as well as healthcare professionals, but patients need to trust/accept support offered • Need for friends and relatives to understand difficulties faced/problems created by disease Carter(2019) [36] • Spending time with family and friends disrupted due to foot symptoms and functional limitations • Lowered mood due to preoccupation with pain; reliance on family members for support • Better understanding/empathy from those with affected family members; some found benefit from support groups • Patients with PsA and foot problems conscious of change to physical appearance and footwear restrictions; demoralised Table 3 Results of scoping review of consumer perceived other service needs related to inflammatory arthritis (Continued)

Author, Year Results
and stigmatised by the appearance of their feet; need to wear clothing and footwear to hide disease; self-conscious and reluctant to use gait aides Cunha-Miranda (2010) [37] • 22.4% of RA patients feel "alone" in fighting disease; limited support Hamnes (2011) [39] • Shared experiences, support and recognition from peers and validation of problems Henchoz (2013) [40] • Community based free physical activity programmes for patients with arthritis Herrera-Saray (2013) [23] • Feeling weird/embarrassed among others due to assistive device Kostova (2014) [42] • Need for understanding from family members • Lack of visible symptoms meant some family members unable to appreciate patient's suffering so felt misunderstood Kristiansen (2012) [43] • Lack of understanding from friends/wider social environment, withdrawal by patient and their friends • Importance of work in developing social relationships and feeling of belonging • Loss of work leads to loss of social networks • Peer support enables participants to meet others with RA, especially with recent diagnosis, to legitimize personal experiences with symptoms that cannot be objectively measured, role models to show maintaining a close-to-normal life is possible Laidmae (2009) [44] • Loneliness & the need to socialize with family & friends; 19% of respondents lonely • 33% of participants living alone (29% of total population are lonely) • Difficult to go out due to financial difficulties, mobility problems and fear of falling a victim of crime • Need for emotional support; emotional support received from the family consists of consolation, encouragement, listening to the worries and providing security Lempp (2006) [45] • Retirement leads to loss of social connections • Loss of work means loss of identify, structure of daily life and social life Neville (1999) [31] • 44% RA patients interested in self-help groups Sato (2008) [46] • Difficulties in personal affairs in 62.9%; sexual difficulties in 14.3% • Emotional support from spouse or partner received by 56.2%; usually parents (27.3%) or children (20.5%) Strand (2015) [47] • Isolation in 26%; friends/family not understanding pain and fatigue in 54% • RA affected closest relationships 32% (e.g. playing with children/grandchildren) • More difficult to find a partner 40%, less confident in sex-life 47%, negative affect on intimacy 17% Sverker (2015) [48] • Difficulties (due to physical limitation/pain/fatigue) with social relationships, e.g. caring for children/grandchildren, participating in social events and engaging in community life Wollenhaupt (2013) [51] • Impact of RA on social activities "strong" to "very strong" 27.6%

OCCUPATIONAL NEEDS
Alten (2019) [33] • 95% of participants reported leave, retirement or lack of career progression since RA diagnosis; 18% forced to retire and 23% slow career progression • 31% inadequate physical accommodations at work, 36% inadequate emotional accommodations • Barriers to work include difficulty with hand function (44%), pain (43%), unpredictable state of health (34%) Carter (2019) [36] • Foot-related disability contributed to loss of work, or difficulty performing jobs due to foot pain and stiffness • Impact of modified footwear on job roles e.g. unable to wear dress shoes or safety boots Cunha-Miranda (2010) [37] • RA affected ability to work: 24.7% • Absence from work due to illness: 21.6% (mean duration of absence 16-17 days) Giacomelli (2015) [38] • 34% reported difficulties at work; increased work absenteeism in 11, 7.9% retired Hamnes (2011) [39] • Need to continue to work, important to avoid disability pension (last resort) • Wanted to know work-related rights and rights related to social security Kristiansen (2012) [43] • Need to continue work (with or without special conditions); this helped to maintain normal life and sense of normality; need for support to clarify work capacity Table 3 Results of scoping review of consumer perceived other service needs related to inflammatory arthritis (Continued)

Author, Year Results
• Work important to social, professional and personal identity, strongly linked to self-esteem • Colleagues as a personal/social networkfriends and supports Laidmae (2009) [44] • 27% of respondents employed; 25% concerned about losing their job • Perceived job insecurity • Alleviation of financial problems with work Lempp (2006) [45] • Flexible working hours; lifts (elevators) at work place-to overcome difficulty in climbing stairs • Desire to continue to work • Loss of work means loss of identity, social network and structure of day Neville (1999) [31] • Ability to work and maintain a job Sato (2008) [46] • Majority of patients employed; 55-57%; 26% informed work about RA • RA-related difficulties at work in 47.8%; income protection accessed by 32% Strand (2015) [47] • Negative impact on work arrangements, productivity and self-confidence • Less productive at work due to RA 71%; less confident at work due to RA 50% • Stop working/retire early 23%, changed type of work 17% or hours 17%; modifications to workstation/environment 12%, pay cut 8% • Regularly > 10 days off work per year in 22% • RA had negatively affected career prospects 9% Van der Meer (2011) [50] • Need to improve/increase support in workplace (including from colleagues) • Ergonomic accommodations • Need for control over work; flexible hours and tasks, possibility of working at home, working alone when necessary (to improve concentration) • Easier commuting to work including getting a transfer when travelling a long distance to the workplace, easier parking arrangements • To understand legal work rights: including accommodations at the workplace and concerning disclosure when applying for a job Wollenhaupt (2013) [51] • Physical impairment in daily work (inside and outside home) "rather strongly" to "very strongly" impacted in 49.6%

EXERCISE AND LEISURE-RELATED NEEDS
Been-Dahmen (2017) [34] • Empowered by information about type and necessity of physical exercise, as well as seeing other patients exercising Bergsten (2011) [35] • Unable to do particular physical activities Carter (2019) [36] • Difficulty with walking especially on uneven ground in those with PsA and foot involvement Cunha-Miranda (2010) [37] • Less able to do sports Henchoz (2013) [40] • Physical, psychological, functional and social benefits to exercise; arthritis specific barriers e.g. loss of function, pain, stiffness, concern of peers • No programs/consideration for those with arthritis • Non-arthritis specific barriers eg scheduling, cost, lack of time, peers do not exercise, carer responsibilities, etc Strand (2015) [47] • Adverse effect of RA on social, family and leisure activities • Limited enjoyable activities (42%) and spontaneity (57%), keeping fit/playing spots (46%), gardening (39%), outdoor activities (33%) • Favourite hobby painful in 31% Thomas (2019) [49] • Need for physical activity as a key part of managing RA; symptoms may help to motivate people to be physically active • Options where physical activity also had a social element, as a mode of transportation, dog walking all popular forms of activity • Some hesitation about general group activity classes; concern re: being unable to keep up or lack of understanding of RA

TRANSPORT NEEDS AND ENVIRONMENTAL MODIFICATION
Herrera-Saray (2013) [23] • Architectural barriers in the home, the workplace and/or outdoors • Lack of design standards for persons with disabilities, e.g. ramps, parking spaces and ample space for movement Henchoz (2013) [40] • Environmental modifications favourable for physical activity: availability of facilities free of charge, maintenance of pavements, streetlights Laidmae, (2009) [44] • Fear of falling victim of crime (16%); perceived increased risk due to physical impairment and poor health • Transport needs Strand (2015) [47] • Difficulty with driving in 17% Wollenhaupt (2013) [51] • Unable to drive a car 6.9% retirement in 8-18% [33,38] with 25% worrying about job losses [44]. The need for modified footwear impacts on job roles in those with PsA and foot disease (e.g. unable to wear dress shoes or safety boots) [36]. Factors improving work retention included physical ability [51], travel arrangements (parking, working from home) [50], flexibility of hours and conditions [45,50] and modifications in the workplace [45,50]. Participants wanted more information about their work-related rights [39,50].

5) Exercise and leisure related needs
Five OA studies (Table 2) [22,24,25,28] identified barriers to exercise and leisure participation. Disease progression meant people needed to modify or swap exercise/leisure activities [24]. People worried about their inability to exercise [25], especially pain, inability to continue activities previously enjoyed [28,32], missing out on activities with others [22] and needing to engage in more sedentary activities [24].
Seven studies investigated needs and attitudes of people with IA to exercise and leisure activities (Table 3) [ 34-37, 40, 47, 49]. Participants felt empowered by information about type and necessity of physical exercise [34]. In RA, physical, psychological, functional and social benefits from exercise were identified [35,40]; exercise was identified as a critical part of self-management [49]. However, RA limited mobility and caused pain, restricting participation in specific exercises/sports [37,40], with some activities wholly inaccessible [35]. Some participants found RA symptoms to be a motivator to be active [49]. Social, family and leisure activities were affected, limiting sports, fitness, hobbies and spontaneity [47]. Participants preferred options where physical activity served an additional purpose e.g. social contact, transportation, dog walking [49]. Participants identified a lack of RA-specific exercise programs, with exercise programs and instructors failing to consider limitations imposed by arthritis [40] or hesitation about joining general exercise classes due to being unable to keep up or lack of understanding [49]. Patients with PsA and foot disease struggled with walking, particularly on uneven ground [36].

6) Transport needs and environmental modification
Four OA studies (Table 2) [21,24,25,28] investigated needs related to transport. More than 20% of people experienced difficulties in one study [21]. Services to increase accessibility to public transport may improve people's ability to socialise [25]. In people with hand OA, supports were needed to facilitate opening doors, holding the steering wheel and using bicycle hand brakes [24], with use of public transportation limited by their inability to hold straps/poles [24]. Travel required significant planning, including in getting in and out of cars, finding seated toilets in Taiwan and needing plan analgesia around going out [28].
Five IA studies (Table 3) [40,41,44,47,51] identified environmental limitations to moving about outside the home. These included lack of appropriate transport [44] and unsafe environment related to fear of falling related to environmental factors (uneven pavement, lack of ramps and lighting) [40,41,44]. Driving could be difficult [47,51]. Some participants worried about falling victim of crime due to frailty [44].

Discussion
This review demonstrates the pervasive impact of arthritis on peoples' lives, independent of aetiology. We have identified six key domains in which arthritis impacts life: daily living, social participation, financial security, occupation, exercise/leisure and transportation. All areas of need identified were common to OA and IA, illustrating that need appears to primarily be linked to symptoms common across musculoskeletal conditions, rather than aetiology or pathogenesis.
Non-healthcare needs related maintain daily functioning were identified by people with both OA and IA. Deficits lead to a sense of "failure", particularly being unable to do household chores or care for children [22]. The pervasiveness of this theme highlights the importance of supporting functional ability in both ADLs and the workplace. People with arthritis appear to need robust social support systems to assist them with ADLs [22], and targeted assistive devices (e.g. for cooking) to enable participants to complete tasks and feel "normal" [23,24,40].
Needs related to social functioning were similar in people with IA and OA. Loneliness, withdrawal [24,25,43,44], and lack of understanding from family, friends and communities were troublesome [23,43], but partly negated by peer support groups [23]. People with both IA and OA wanted means to reduce social isolation. In the wider literature, social connectedness and "diffuse social relationships" have been identified as crucial to psychological wellbeing [54]. An individual's health can be related to the strength of their social relationships, with participants in this review with "strong" social supports more likely to perceive good health [26]. Interestingly, in one study people with IA tended to be more interested (44%) in peer support groups than those with OA (20%) [31]. Further data are required regarding optimal delivery of peer support groups, particularly as selfmanagement education groups are limited in effectiveness for most clinical outcomes [55].
The need for work retention was critical to people with both OA and IA, for financial security and social connectedness [43]. Arthritis is associated with reduced work productivity, early retirement and reduced wealth [6]. Flexibility and environmental adaptations in the workplace facilitated work retention in people with IA and OA [24,25]. Maintaining employment is a key issue in people with RA, facilitated by both environmental adaptations and flexible work hours [56]. Use of modified schedules when required was associated with lower workplace activity limitation, fewer job disruptions and productivity losses [56]. Furthermore, loss of work or retirement exacerbated feelings of social isolation, highlighting the importance of employment in social connectedness and self-worth [43,45]. Programs targeted to improve work retention in people with arthritis can reduce anxiety, improve mood and life satisfaction [57]. Given the importance of employment in financial wellbeing and social connectedness, further work is needed to identify contributors to work retention in people with arthritis and to support and educate employers and practitioners in providing these.
Both OA and IA had similar detrimental effects on physical and leisure activity participation. When activities couldn't be modified/replaced, participants were excluded from activities with family and friends [22,40]. Arthritis patients need assistance from healthcare providers with arthritis-specific exercise programs [58], as well as information about benefits and safety of exercise [34]. People with OA frequently report mobility and pain as barriers to participation in exercise [59], despite high quality evidence for its therapeutic benefits in OA and IA [60]. Access to practitioners with skills and knowledge in behaviour change, pain science and appropriate exercise programs/facilities is important for people with arthritis.
Transportation needs for those with IA and OA had broader impacts on other areas of need. Difficulties with transportation exacerbate dependence on others [40,41], unemployment [50] and social isolation [32]. Transportation is intimately linked with freedom and independence in older adults, and has a pervasive impact on life [61]. Further research is required to understand factors limiting transportation and improve uptake in people with arthritis.
We have identified some contrasts between the experiences of people with OA and IA. Those with OA identified a lack of acknowledgement and community support [23,43]. They felt OA and the resultant disability were underestimated with limited media coverage of, and research into, OA [23]. While participants with IA felt that sometimes their symptoms were underestimated [47], they did not report trivialisation of the disease itself. In the wider literature people with RA felt inadequate support and information were available, particularly in specific situations like pregnancy [62]. Public health campaigns could assist with educating the wider community about arthritis and its impact.
This study has limitations. Firstly, although these data highlight the impact of OA and IA, existing literature focusses on problems related to arthritis rather than evaluation of actual needs. Thus, due to a paucity of data, we have not directly questioned the "needs" of people with OA and IA. It remains unknown which services exist and meet current needs, and which are insufficient, an important gap in the literature. This is a focus of the World Health Organisation's Integrated Care for Older people approach. However, in line with the Gothenburg model of person-centred care, a key step in providers being able to deliver effective, person-centred care is to understand the experience of the person [63]. Accordingly, we believe summarising the literature regarding these issues is an important step towards addressing non-healthcare needs of people with arthritis, and enabling the delivery of effective person-centred care. Given the limited data, it is difficult to comment on whether non-healthcare needs differ according to country or social setting. Furthermore, as participants included mainly post-menopausal females, generalizability may be limited to other groups (particularly men, younger people, and those in low-and middle-income settings). Studies included modest sample sizes. Heterogeneity of data collected means different areas were investigated in each study; this provides limited triangulation and/or validation of any single conclusion. Overall studies were at moderate risk of bias, with higher risk of bias in data collection and recruitment. Finally, we did not perform inter-rater reliability for study selection.
This review has numerous strengths. A comprehensive scoping literature search was performed across four different databases. Many qualitative studies were included to enable deeper exploration of participants' nonhealthcare needs and perspectives. This search captured data from multiple levels of care, including communitybased populations, as well as a range of different disease stages. OA studies involved a range of joints.

Conclusions
Arthritis has a pervasive impact on different areas of life, regardless of disease aetiology. To patients, the similarities in functional impact far outweigh the differences in the disease pathogenesis. Whilst people with arthritis are acutely aware of their inability to perform tasks and perceived "failures", little work has been performed to identify the patients' perspective of non-healthcare needs to facilitate targeted service provision and provide holistic care. Future research is required to assess this, across a broader population and joint involvement, to identify whether there may be joint-specific non-healthcare needs. Improved characterization of the patients' perceived non-healthcare needs is necessary to provide relevant support and services for people with arthritis.