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Table 3 Results of scoping review of consumer perceived other service needs related to inflammatory arthritis

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

Author, Year Results
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
 Cunha-Miranda (2010) [37] • 32.3% report impact of RA on quality of life; 26.4% said RA made life less enjoyable; symptoms of RA controlled daily lives in 25.1%
• 31.8% difficulty performing ADLs
• 25.1% constantly tired
• Difficult tasks included gardening, sports, household chores, sleeping
 Hamnes (2011) [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
SOCIAL PARTICIPATION NEEDS
 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 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%
FINANCIAL NEEDS AND SECURITY
 Laidmae (2009) [44] • Financial hardship in 60%; restriction of foodstuffs, 20% unable to purchase all medications
• Limited sociocultural experiences: cinema/theatre, purchase of books, limited social visits
• Suboptimal home environment: absence of warm rooms, hot running water, drainage, opportunity to wash
 Neville (1999) [31] • > 80% patients reported concerns about health care cuts
• 72% concerned with future financial coping; 56% concerned with present financial coping
Sato (2008) [46] • Income protection accessed by 32%; Financial difficulties in 12.9%
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
• Work important to social, professional and personal identity, strongly linked to self-esteem
• Colleagues as a personal/social network – friends 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%