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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%