An integrative review of experiences of patients with rheumatoid arthritis.

An integrative review of experiences of patients with rheumatoid arthritis L.W. Poh1 RN, BSc (Nursing) (Honours), H.-G. He2 RN, PhD, MD, C.S.C. Lee3 RN, MSc, P.P. Cheung4 MBBS, PhD, FRACP & W.-C.S. Chan5 RN, PhD 1 Staff Nurse, Division of Nursing, Khoo Teck Puat Hospital, 2 Assistant Professor, 3 Lecturer, Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, 4 Consultant, Division of Rheumatology, National University Hospital, Singapore, 5 Professor, School of Nursing and Midwifery, Faculty of Health and Medicine, The University of Newcastle, Newcastle, Australia

POH L.W., HE H.-G., LEE C.S.C., CHEUNG P.P. & CHAN W.-C.S. (2015) An integrative review of experiences of patients with rheumatoid arthritis. International Nursing Review 62, 231–247 Aim: To provide an overview of evidence on the experiences and needs of adults living with rheumatoid arthritis (RA). Background: Many research have studied the impact of RA on one’s quality of life, but no reviews have examined the overall experiences of patients living with RA. Methods: An integrative review was performed to synthesize the experiences and/or needs of adult patients with RA based on articles retrieved from databases of CINAHL, Scopus, PubMed, PsycINFO and Web of Science, and published between January 2003 and March 2014 in English. Results: A total of 38 studies were reviewed. RA has adverse effects on patients’ quality of life due to its negative impacts in their physical and psychosocial aspects of health. Patients with RA cope with these impacts using various methods and are frequent users of healthcare services. However, few studies have evaluated patients’ further needs in coping or the effectiveness of their coping mechanisms, and patients’ experiences with health care. Conclusion: This review provides evidence for healthcare professionals to gain a better understanding of RA patients’ experiences and needs. Future studies can explore interventions that will enhance the quality of current healthcare practices and ultimately improve patients’ quality of life. Implications for nursing and health policy: Establishing a positive healthcare professional–patient relationship is crucial and healthcare professionals are in a position to provide greater informational and emotional support to patients. Policy makers and healthcare organizations need to look into ways to enhance the healthcare services to better suit RA patients’ needs. Keywords: Adults, Experience, Rheumatoid Arthritis, Singapore, Support Needs

Correspondence address: Dr Hong-Gu He, Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11, 10 Medical Drive, Singapore 117597; Tel: (65)6516-7448; Fax: (65)6776-7135; E-mail: [email protected].

Funding statement This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. Conflict of interest statement There is no conflict of interest.

© 2015 International Council of Nurses

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Introduction Rheumatoid arthritis (RA) is a chronic progressive autoimmune disease characterized by inflammation of synovial joints (Barker & Puckett 2010). Its global prevalence in adult populations is estimated to be about 0.5–1.0%, with an incidence of approximately 0.03% (Kvien 2004). The incidence of RA onset increases with age and peaks between 40 and 60 years old, and women are three to four times more likely to suffer from RA than men (Rat & Boissier 2004). Overtime, RA can lead to long-term cartilage and bone destruction, causing immense pain and joint stiffness. It can also cause inflammation in areas other than the joints, such as the lungs or pericardium, resulting in extra-articular manifestations (Palmer & El Miedany 2013). Despite advances in the medical field, the pathophysiology of RA remains poorly understood, its exact trigger unknown, and there is no known cure for RA. Currently, management of RA is focused on lifelong pharmacological treatment, with the goal of remission or lowering disease activity to prevent irreversible joint damage (Onysko & Burch 2012). However, the effectiveness of RA drugs on each patient is often a process of trial and error testing, and these drugs have also been associated with significant potential adverse effects which require close monitoring and considerable costs (Palmer & El Miedany 2013). Furthermore, despite advancements in pharmacological treatment of RA over the years, research has shown that the overall quality of life (QoL) of RA patients remains significantly lower than the general population (Haroon et al. 2007). Therefore, to optimize the management of RA and enhance the support provided to RA patients, knowledge about their experiences and support needs, particularly when appraised within their own socio-cultural contexts, is important. Such knowledge could enable the development of better healthcare services and contribute towards a more holistic care of RA patients, which will ultimately improve the QoL of patients with RA.

Aim of this review The aim of this literature review was to summarize the current body of evidence and to provide a comprehensive overview of the experiences and needs of adults living with RA so as to identify any gaps in existing literature and practice.

patients with RA by systematically analysing and summarizing the research literature with diverse methodologies (Whittemore & Knafl 2005). A well-prepared integrative review can be used to evaluate the strength of the scientific evidence, identify gaps in current research and serve as a bridge between related areas of work (Russell 2005). Search strategies

Literatures were searched systematically from the electronic databases of CINAHL, Scopus, PubMed, PsycINFO and Web of Science. To ensure a systematic and thorough search, separate searches were conducted for qualitative and quantitative literatures. For qualitative literature, keywords of experience(s), perception, meaning, rheumatoid arthritis, interview, narrative, qualitative, focus group and phenomenon were used singly and in various combinations during the search. For quantitative literature, keywords including rheumatoid arthritis, quality of life, health-related quality of life (HRQoL), healthcare need, healthcare demand, coping, cope, functional status, functional disability, physical disability, physical well-being, physical function, pain, fatigue, anxiety, depression, psychological well-being, emotional well-being, social support, social well-being and psychosocial well-being were used singly and in various combinations during the search. The titles of the articles from the initial search results from each database were assessed for relevance. Irrelevant titles were excluded and duplicates were removed. The abstracts of the remaining articles were then evaluated and those deemed irrelevant were further excluded. Finally, full texts of the remaining articles were retrieved for a final detailed evaluation to select the articles to be included in this review. The inclusion criteria included journal articles that: (1) were non-interventional primary studies on RA, regardless of whether they are qualitative, quantitative or mixed-method studies, (2) explored the broad experiences of adults living with RA and its symptoms, or the overall impact of RA and its symptoms on adults’ physical well-being, psychosocial wellbeing, and QoL, and/or their coping, and/or their experiences with health care, and (3) were published in English between January 2003 and March 2014. Studies excluded were those that: (1) focused on juvenile RA and recruited paediatric participants, (2) contained interventions, (3) explored the experience of living with RA in association with other co-morbidities, and/or (4) recruited participants with other rheumatic diseases/ disorders.

Methods Search outcomes Design

This was an integrative literature review, which provided a comprehensive understanding of the experiences and needs of


In total, 19 qualitative and 19 quantitative primary studies were included in this review. Of these studies, 23 explored the physical and psychosocial impact of RA and its symptoms, 9 were

Patients’ experiences of rheumatoid arthritis

Potentially relevant studies identified by literature search, five databases (n=563)

Studies identified for review of abstract (n=64)

Results Studies excluded after evaluation of title, not meeting inclusion criteria, and removal of duplicated articles (n=499) Studies excluded after evaluation of abstract and not meeting inclusion criteria, or full text not available (n=40)

Studies retrieved for detailed review of full texts (n=24) Studies excluded after review of full texts and not meeting inclusion criteria (n=5) Studies included in literature review (n=19)

Descriptive qualitative study (n=14) Phenomenology (n=2) Grounded theory (n=2) Qualitative case study (n=1)

Fig. 1 The search and evaluation process for qualitative literature.

Potentially relevant studies identified by literature search, five databases (n=2095)

Studies identified for review of abstract (n=133)

Studies excluded after evaluation of title, not meeting inclusion criteria, and removal of duplicated articles (n=1962) Studies excluded after evaluation of abstract and not meeting inclusion criteria, or full text not available (n=98)

Studies retrieved for detailed review of full texts (n=35) Studies excluded after review of full texts and not meeting inclusion criteria (n=16) Studies included in literature review (n=19)

Cross-sectional, descriptive quantitative study (n=19)

Fig. 2 The search and evaluation process for quantitative literature.

about coping with RA, and 6 focused on RA patients’ healthcare experiences. The search strategies and outcomes are presented in Figs 1 and 2, while a summary of the reviewed articles is shown in Table 1.


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Impact of RA on QoL: physical well-being

The experience of severe pain caused by RA was explicitly highlighted in five of the qualitative studies reviewed (Ahlstrand et al. 2012; Häggström & Nilsson 2009; Hughes et al. 2009; Hwang et al. 2004; Kett et al. 2010). RA pain, described as extreme and ceaseless, restricts mobility and limits one’s ability to carry out daily activities, work or participate in meaningful activities. As a result, patients had to moderate their activity levels and modify their activities and environment to adapt to their functional limitations. Hughes et al.’s (2009) grounded theory study further pointed out that because of restrictions of mobility and the desire to not exacerbate pain, RA patients’ lifestyle became increasingly sedentary and dependent on others. The same point was mirrored in a case study by Häggström & Nilsson (2009), in which the sole participant lamented that her life was controlled by the pain she experienced. However, the findings from this case study were based on the analysis of one woman’s diary about her experiences of living with RA over a period of 8 years. While this provided a continuous description of her experience and thereby eliminated recall bias, interpretation of the diary content is subjective. Furthermore, findings based on one individual’s experiences highly limit transferability. Four other qualitative studies explored the experience of fatigue in RA (Feldthusen et al. 2013; Hewlett et al. 2005; Nikolaus et al. 2010; Repping-Wuts et al. 2008). Participants in all four studies described RA fatigue as different from normal tiredness. Like pain, it affected their ability to carry out physical activities and upset overall activity pattern due to increased need for rest and sleep. The negative impact of pain and fatigue on physical functioning, and hence physical QoL, is supported by eight of the quantitative studies reviewed (Cho et al. 2013; Da Silva et al. 2011; Dadoniene et al. 2007; Haroon et al. 2007; Ibn Yacoub et al. 2012; Lu et al. 2008; Reinseth & Espnes 2007; Rupp et al. 2004). In a Korean study, it was reported that 89.8% of participants had pain or discomfort, 59.1% had problems with mobility, 38.6% with self-care and 64% with usual activities (Cho et al. 2013). Pain and functional disability were found to be the strongest determinants of lower QoL in RA patients (Cho et al. 2013; Haroon et al. 2007). A study from Lithuania by Dadoniene et al. (2007) found that nearly half of their participants were dependent on others, and functional impairment was the most important risk factor in dependency.

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Table 1 Details of included studies (n = 38) Author (year) Country

Aim of study

A. Qualitative studies (n = 19) Ahlstrand et al. To describe (2012) experiences of Sweden pain and its relationship to daily activities in people with RA

Design and data collection methods

Settings/ recruitment

Descriptive qualitative design Semi-structured focus group discussions

Three rheumatology 33 men and women of units in South East different ages with RA Sweden more than 4 years

Beaton et al. (2012) USA

To elicit information on RA experience, pain management among adult male veterans

Bergsten et al. (2011) Sweden

To generate a Grounded theory theoretical model approach how patients Semi-structured experience their interviews management of RA in everyday life

Brand et al. (2010) Australia

To explore perceived needs and adequacy of the current model of care for people with RA who live in Victoria, Australia

Feldthusen et al. (2013) Sweden

To describe how Descriptive qualitative persons with RA design of working age Semi-structured focus experience and group discussions handle their fatigue in everyday life


Descriptive qualitative design with grounded theory approach to analysis Semi-structured interviews

Descriptive qualitative design Semi-structured focus group discussions

Participants

Findings

– Difficulties in moderating activity levels causing imbalance in daily life activities – Having to prioritize or give up on certain activities – Frustration due to barrier to daily activities and social participation – Social support perceived as important. Lack of support obstructed social participation and created a sense of alienation. Los Angeles, 12 male veterans (age Three coping concepts were associated with California range: 36–75 years; movement: mean disease – Keep moving duration: 13 years) – Consequences of not moving – Staying physically active Three coping concepts related to emotion: – Thinking positive thoughts – Doing jobs – Focusing on male identity A rheumatology 10 women and 6 men Use of personal resources to manage RA: hospital with RA (age range: – Illness perceptions 28–82 years; disease – Self-confidence duration range: 2–42 – Self-efficacy years) – Grasping of support from relatives, friends and healthcare professionals Four ways patients manage their RA: – Mastering – Relying – Struggling – Being resigned Victorian public 36 women and 3 men – Need for additional information support hospital outpatient (mean age: 52.9 years; from healthcare professionals clinics and private mean age at disease – Felt that there was never the time to talk rheumatology onset: 44 years old) about anything other than the physical practices symptoms – Important topics that caused anxiety, such as the long-term impact of RA and prognosis, were inadequately discussed – Inadequate processes for continuity of care Themes: A rheumatology 19 women and 6 men – Perception of fatigue: unpredictable, clinic in Western with RA reporting overwhelming, associated with negative Sweden fatigue score of >=3 emotions (age range: 20–60 years; disease duration – Consequences due to fatigue: increased need range: 1–27 years) for rest and sleep, imbalance in daily life, forced to postpone, reschedule or cancel plans, difficulties in maintaining social life and fulfilling roles – Communicating fatigue: fatigue was perceived as a factor not given much consideration – Strategies to handle fatigue: conscious self-care and mental strategies. Planning and prioritizing.


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Table 1 Continued

Author (year) Country

Aim of study


Häggström & Nilsson (2009) Sweden

To investigate the meaning of living with the phenomenon RA using one woman’s personal diary over 8 years

Single-case study with NA phenomenologicalhermeneutic approach A personal periodically written diary spanning 8 years

Hewlett et al. (2005) UK

To explore the concept of fatigue as experienced by patients with RA

Descriptive qualitative design Semi-structured interviews

Hughes et al. (2009) UK

To explore the experiences of patients with RA, to improve understanding of the impact of the condition on a person’s life

Grounded theory qualitative design Semi-structured interviews

Hwang et al. (2004) Korea

To explore and Descriptive describe the illness phenomenology experience of design women with RA in Informal unstructured Korea interviews



Participants

Findings

1 woman (60 years old; Themes: diagnosed with RA for ‘To feel doubt, grief and lost identity’ 8 years) – Being sad about constant physical pain, loss of bodily function and feelings of constant tiredness – Losing identity creates a lack of confidence – Being sad and disappointed when meeting carers and colleagues face-to-face ‘To be good enough’ – Long process in which an expression of more confidence becomes visible – Enjoying the small things in life Not explicitly stated 15 patients with RA and Experiences: fatigue (with score of – RA fatigue is different from normal >=7 on a 10-cm VAS) tiredness, extreme, not earned and unresolving – Has far-reaching effects on physical activities, emotions, relationships, and social and family roles – Self-management strategies employed (acceptance, positive attitudes, pacing, rest) with limited success. Some were uncertain about how best to manage their fatigue. – Most did not discuss fatigue with clinicians but when they did, they felt it was dismissed. Participants held negative views on the management of fatigue. Participants’ own Convenience sample of 9 Experiences: homes in North women and 4 men – Disturbance in sleep, fatigue and loss of West England (age range: 51–72 appetite years; disease – Lifestyle became more sedentary and duration: 3–35 years) socially reclusive to avoid exacerbating pain – Experienced negative emotions – Feelings of depression further exacerbate sedentary lifestyle and social withdrawal, lower perception of self-worth – Forced to make lifestyle changes and occupation changes, or retire early. Such changes were often resented and further fuel the negative emotions. Three university 5 women with RA of at Themes: hospitals in Busan, least 6 months (age – Severe pain Korea range: 34–61 years; – Self-esteem disease duration – Negative feelings range: 4–21 years) – Reflect the past life – Concentrate on recovery from disease – A comfortable mind in pain – Support of family and others important – New life

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Table 1 Continued


Aim of study



Iaquinta & Larrabee (2004) USA

To explore the lived experience of RA, the patient’s view of the nurse’s role and the patient as co-manager of RA

Descriptive phenomenology design Semi-structured interviews

North Central West 6 Caucasian women (age Virginia (homes of range: 43–67 years; participants and disease duration: 7–38 private room in a years) university library)

Kett et al. (2010) UK

To explore patients’ experiences of the characteristics of flares of RA, their beliefs about the causes of such flares, their self-management strategies, their triggers to consult health professionals and the information they had received about RA flares from health professionals

Descriptive qualitative with grounded theory approach to data analysis Semi-structured interviews

Rheumatology department of Sandwell and West Birmingham Hospitals NHS Trust

Kristiansen et al. (2012) Denmark

To explore how everyday life is affected by RA in order to inform patient education and clinical practice and generate further research

Descriptive qualitative design Focus group interviews

Recruited from outpatient clinics at two Danish hospitals, conducted in a community healthcare centre


Participants

Findings

Themes: – Persuading self and others of RA’s authenticity: understanding by others was elusive yet desired – Cultivating resilience – Negative feelings: concerns about adverse effects of medications, future outcomes of the disease process, possible physical deformity and forced dependency; adjust medication dosage, motivated by fear; frustration in relation to treatment and disease – Navigating the healthcare system: dissatisfaction with medical care – Masterminding new life ways 14 female and 7 male – Self-management strategies: symptoms RA patients from an management and management targeted at ethnically diverse perceived cause of flares population who had – Information that participants would like to suffered a recent RA receive flare in the last 12 • Contact with other RA patients (either months (age range: support group or one-to-one basis) 23–72 years; disease • For flare to be described as ‘just a phase’ duration range: 0.5–12 and that symptoms would improve years) • Information about the disease and flares for their family, especially children, would be beneficial in order for them to understand the condition • Specific advice on how to manage flares, or what to do out of hours • Non-pharmacological management strategies, impact of stress and food on flares Purposeful sampling Themes: (age, educational – Self-identity/self-perception: RA as background, gender, disruption of normality and identity disease duration) of 32 – Social relationships: difficult to accept participants changes to roles and division of labour; lack of understanding from spouses, relationships broke down; lack of understanding from friends, stigmatized, social withdrawal – Dealing with healthcare system • Perceived medical treatment as a precondition for maintaining functional capability • Ambiguous feelings towards the medication, concerned about long-term side effects • Feelings of powerlessness and helplessness as pharmacological treatment is a process of trial and error • Objectification of patients • Missing psychological support to handle emotional reactions


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Table 1 Continued


Aim of study



Participants

Lack et al. (2011) UK

To investigate the psychosocial experiences of men with RA


A hospital rheumatology department

Lempp et al. (2006a) UK

To study the experiences and views of patients with RA on the quality of health care received in primary and secondary care To provide detailed understanding of the direct personal experiences of living with RA and the impact of illness upon patients’ lives To gain further insight into the experience of fatigue in RA


Two outpatient clinics in South East England


Two outpatient clinics in South East England

Descriptive qualitative design In-depth structured interviews

Rheumatology clinic of Medical Spectrum Twente, Enschede, The Netherlands


General public

12 male patients with RA Experiences: (age range: 38–78 – Emotional distress and depression resulting years; disease duration from loss of physical ability and strength range: 1.5–55 years) – Being unemployed or unable to fulfil other roles with social status signified loss of power for men – Appearing weak, appearance concerns and loss of independence were a humiliating experience for men, which led to avoidance of social contact 22 female and 4 male RA Themes: patients (age range: – Personal health beliefs: taking own decisions 25–86 years; disease about medication, dose and frequency based duration range: 1–29 on perception of not feeling well and what years) in their opinion ‘was good for them’ – Professional attitudes: good relationships with health staff matters, patients want more equal dialogue with health staff 22 female and 4 male RA Main theme: changes to identity patients (mean age: 56 – Emotional identity years; disease duration – Physical identity range: 1–29 years) – Identity as parent/carer – Identity as an independent person – Identity as a partner – Identity as a healthy woman – Public identity 23 female and 8 male – Most negative emotions were reported by outpatients with all female patients, especially younger women levels of fatigue, with multiple daily roles diagnosed with RA for – Most felt restricted by fatigue in daily at least 2 years (age mobility and activities; however, a few range: 32–83 years) older patients (>67 years) reported no consequences at all Purposive sampling of 20 – Struggle to balance multiple roles as spouse, midlife and late-life mother, worker and homemaker while women (age range: contending with RA 39–86 years) (sampled – Feelings of frustration, disappointment from an earlier study) and guilt when unable to meet family expectations and social role norms – Feelings of loneliness and isolation, especially when people do not understand their limitations – Family dynamics changed as roles shifted and relationships became strained and altered – Experience in social roles became more positive as they grew older due to unburdening of social role obligations

Lempp et al. (2006b) UK

Nikolaus et al. (2010) The Netherlands

Plach et al. (2004) USA

To investigate women’s views on how fulfilling they found particular roles to be, including spouse, mother, worker and homemaker, while contending with RA


Findings

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Table 1 Continued


Aim of study



Participants

Findings

Repping-Wuts et al. (2008) The Netherlands

To explore the experience of fatigue from the patients’ perspective


A rheumatology outpatient clinic

17 female and 12 male RA patients (age range: 36–80 years; disease duration range: 2–34 years)

Ward et al. (2007) UK

To provide more understanding of what RA patients want and need from an outpatient visit

Descriptive qualitative design Structured interviews

An outpatient 18 female and 7 male department of a patients who large teaching experienced care in a hospital in West nurse practitioner Yorkshire, England clinic, junior doctor clinic, or consultant clinic (age range: 37–76 years; disease duration range: 2–32 years)

– RA fatigue is unpredictable, unexplainable and exhausting, causing anger and frustration – Finding management strategies through trial and error – Most patients did not discuss fatigue with clinicians explicitly and believe that they have to manage it alone – More information on fatigue at the start of the disease is desired. Some patients feel nothing could be done for fatigue, as it is part of the disease and the lack of medication for fatigue. Overall, respondents were satisfied with the professional care they received. Patients want: – Clear and effective communication – Positive relationships with practitioners – To feel in control of their condition – Clear explanations during consultations information in oral and written forms – Access to practitioners between scheduled appointments as a way of coping with apprehension – To feel valued by society through having their difficulties appreciated and understood by others

Descriptive quantitative, cross-sectional design Interviews, self-administered questionnaires (EQ-5D, HAQ, DAS-28, VAS-Pain)

Recruited from Hanyang University Hospital for Rheumatic Diseases in Seoul, South Korea

Descriptive quantitative, cross-sectional design Questionnaires that measured constructs as number of roles, role stress, role balance, psychological well-being and illness severity

Not clear

B. Quantitative studies (n = 19) Cho et al. To identify factors (2013) influencing Korea health-related quality of life for Korean RA patients and factors associated with each dimension of the EQ-5D

Coty & Wallston (2008) USA

To examine the relationships among number of roles, role quality, role stress, role balance and psychological well-being in women with RA


Convenience sample of 225 RA patients (89.8% female)

– In total, 59.1% of patients had problems with mobility, 38.6% with self-care, 64% with usual activities, 89.8% with pain/discomfort and 55.2% with anxiety/depression – EQ-5D scores showed moderately strong inverse correlation with HAQ (r = –0.715) and weak inverse correlation with VAS-Pain (r = –0.499) – The strongest determinants of lower QoL in Korean RA patients were functional disability, higher disease activity and pain Convenience sample of – Women with RA had lower levels of 47 healthy women and psychological well-being than healthy 50 women with RA women – Women with RA who reported experiencing greater illness severity also reported higher levels of role stress, less role balance and lower levels of psychological well-being – The two groups did not differ statistically significantly with respect to number of roles, role quality, role stress or role balance, suggesting that the women with RA carried out their lives as usual despite their medical conditions


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Table 1 Continued


Aim of study



Participants

Cunha-Miranda To determine in a Descriptive quantitative, Recruited from Convenience sample of et al. (2010) population of cross-sectional design outpatient clinics 223 RA patients Portugal RA patients the Questionnaires in person of several (82.5% female) sources of and by telephone rheumatology information about about their units or RA, what unmet expectations, the departments of needs exist and the degree and type of several hospitals in level of patient information they Portugal involvement in expected, and their therapeutic unmet needs decision

Dadoniene et al. (2007) Lithuania (Europe)

Da Silva et al. (2011) 11 European countries

Englbrecht et al. (2012) 12 European countries

Haroon et al. (2007) India

To estimate the burden of RA in Lithuania in terms of patients’ need for help from other persons and to explore the factors influencing the need for physical help To assess the impact of morning symptoms and functional impairment on aspects of quality of life in patients with RA To investigate the relation of coping strategies on coping effectiveness, helplessness, and mental as well as physical well-being as indicators of quality of life

Descriptive quantitative, cross-sectional design Interviews, mailed questionnaire (VAS-Pain, AIMS, modified HAQ, use of major appliances and adaption measures)

Patients were selected from the RA registry of Vilnius, Lithuania

537 patients responded out of 923 patients approached (response rate: 58.2%)

Descriptive quantitative, Recruited to study cross-sectional design by a number of Structured questionnaire methods that developed based on an varied by country earlier qualitative study

750 patients with RA for >=6 months and impaired morning function at least three times a week (73% female)

Descriptive quantitative, cross-sectional design Questionnaire on coping strategies, coping effectiveness and helplessness (numerical scale), SF-36, DAS-28, HAQ, pain and fatigue numeric scale

Not clear

434 RA patients (77% female)

Clinical immunology outpatient department of a tertiary care hospital

Convenience sample of 136 RA patients (19 men) and 75 age-matched normal controls

To assess the impact Descriptive quantitative, of RA on quality cross-sectional design of life using and to Self-administered study the influence questionnaire of different disease (WHOQOL-BREF, variables on DAS-28, HAQ) quality of life


Findings

– 68.2% of patients consider they are well informed about the disease. – As preferred sources of information about the disease, 67.7% of individuals indicate their rheumatologist, 31.4% their GP, 17% the Internet and 9% the attending nurse – 78% of patients expressed additional needs in information; 26.9% want more information about therapies/treatments; 17.5% each regarding new scientific developments and social support; 16.6% on how to improve symptoms and live better in everyday life – 42.9% of patients report being dependent on others – 25.1% of patients were in definite need for external help – Functional impairment is the most important risk factor in becoming dependent on external help

– 92% of patients described impairment in morning function as moderate or severe – For 82% of patients, impaired morning function has a significant adverse impact on their QoL, causing frustration, anger and distress – Morning symptoms also impact patients’ ability to work – Distancing was the coping strategy used most frequently in RA patients (followed by cognitive reframing, active problem-solving, emotional expression) – Cognitive reframing and active problem-solving contributed to coping effectiveness while emotional expression was related to helplessness – Coping effectiveness was positively related to general health perception, suggesting certain coping strategies to be effective in influencing the QoL of RA patients – WHOQOL scores were significantly lower in patients with RA than in controls – There is significant inverse correlation of HAQ with all four domains of WHOQOL – There is significant inverse correlation of DAS-28 with the physical health and psychological domains – Functional disability is the most important factor affecting QoL

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Table 1 Continued


Aim of study

Ho et al. (2011) To assess the Singapore frequency of, and factors associated with, depression and anxiety in Singaporean patients



Participants

Findings

Descriptive quantitative, cross-sectional design Clinical interviews, questionnaires (DAS-28, HADS, SF-12)

Rheumatology clinic of National University Hospital, Singapore

Convenience sample of 100 RA patients (75% female)

– 26% presented with anxiety, 15% with depression and 11% with both – After adjusting for confounding factors, low income, high levels of rheumatoid factor and poor mental health remained significantly associated with depression – Low income as a result of reduced work capacity and cessation of working life are common consequences of RA – Support influenced pain indirectly by encouraging the use of specific coping strategies, as well as impacting coping effectiveness. Thus, findings highlight the importance of close others in promoting adaptive coping strategies. – Satisfaction with support was associated with reports of higher use of cognitive reframing, emotional expression and problem-solving

Holtzman et al. To examine the role Descriptive quantitative, Recruited via the (2004) of social support cross-sectional design British Columbia Canada in coping and pain Daily process methods: Rheumatoid severity among initial background Arthritis Registry patients with RA questionnaire, and the Provincial followed by a Department of structured daily record Vital Statistics twice daily for 1 week on pain severity, pain coping, satisfaction/ disappointment with support Jacobi et al. To identify Descriptive quantitative, Selected from the (2004a) healthcare aspects cross-sectional design register of an The of inadequate Postal questionnaire outpatient clinic Netherlands quality in RA including for rheumatology care from the socio-demographic and rehabilitation perspective of variables, health in Amsterdam patients characteristics, healthcare utilization and patient’s views on quality of care

73 adults (77% female)

Jacobi et al. (2004b) The Netherlands

679 patients with RA (71% female)

To assess the prevalence of unmet healthcare demands among RA patients, and to determine if these unmet demands indicate underuse


Descriptive quantitative, cross-sectional design Questionnaire on actual healthcare use, unmet healthcare demands, health outcomes (DAS-28, VAS-Pain, HAQ, CES-D) and socio-demographic characteristics

Rheumatology outpatient clinic in Amsterdam

683 patients with RA

– The five most important aspects were: ‘knowledge of rheumatism’, ‘information about concomitant use of medication’, ‘explain side effects of medication’, ‘keep patient’s file confidential’ and ‘open to questions’ – Several aspects of inadequate quality were identified, namely in the field of knowledge of rheumatism and particularly for GPs, PTs, home nurses, and formal home help, and in the field of information on medication use and explanation of side effects for rheumatologists and GPs – Inadequate quality was also observed for all relevant healthcare providers for ‘information on the course of symptoms’, ‘give patient access to file’, ‘choice of another care provider’ and ‘information about home adjustments’ – Only 53% received care from at least one of the healthcare services; 28.7% had an unmet demand for 1 of the 4 services – Overall, patients who reported an unmet demand had worse health outcomes than patients who reported no unmet healthcare demands – Underuse of allied health care, home care and psychosocial care was observed


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Table 1 Continued


Aim of study


Katz (2005) USA

To examine self-management behaviours used to cope with five RA-related stressors (pain, fatigue, physical limitations, joint changes and symptom unpredictability) To assess time use patterns among women with RA

Descriptive quantitative Recruited from design offices of Structured telephone rheumatologists in interviews covering northern topics such as California symptoms, disease history, function, co-morbidities, demographics and psychosocial characteristics Descriptive quantitative, Recruited from cross-sectional design offices of Posted questionnaire and rheumatologists in telephone interview northern California

Katz & Morris (2007) USA

Lu et al. (2008) To investigate the Taiwan effects of disease severity, duration, pain, daily function and sense of helplessness on quality of life among middle-aged and older outpatients with RA Plach et al. To examine whether (2003) the quality of USA women’s social roles mediates and moderates the impact of RA on their psychological well-being

Reinseth & Espnes (2007) Norway

To examine a possible relationship between partaking in non-vocational activities and health-related quality of life in women with RA



Participants

Findings

511 persons responded in baseline year; 463 persons responded to the follow-up year’s interview

– Four self-management strategies were identified: accommodation, active remediation, social and perseverance – Self-management behaviours were most commonly reported for pain (95%) and fatigue (91%) and were least commonly reported for symptom unpredictability (73%) and joint changes (73%) – Accommodation and perseverance strategies were the most commonly used selfmanagement strategies – Women with more severe functional limitations were significantly more likely to spend more time in obligatory activities and less time in committed and discretionary activities – Spending less time in a greater number of committed and discretionary activities was associated with lower life satisfaction and higher levels of depressive symptoms – Duration of RA, pain severity, disease activity, daily function and sense of helplessness correlate negatively with physical QoL – Pain severity, disease activity, daily function and sense of helplessness correlate negatively with mental dimension of QoL – Degree of pain was the most significant predictor of physical QoL

375 women

Descriptive quantitative, cross-sectional design Questionnaire including HAQ-20, HAQ VAS-Pain, DAS-28, RAI, SF-36

Outpatient department of a medical centre in northern Taiwan

Descriptive quantitative, cross-sectional design Posted questionnaire on arthritis history, physical health, psychological well-being and role quality

Recruited from seven 156 women with RA rheumatology physician offices and clinics

Descriptive quantitative, cross-sectional design Two questionnaires, SF-36 and Interest Checklist, were mailed to participants to be completed

Not clear

158 RA patients (82.3% female)

45 women with RA

– In general, women reported high levels of psychological well-being and moderate levels of anxiety and depression – Women in poor health with high role quality were significantly less depressed than women in poor health with poor role quality – For women with RA, those who had high role quality have higher levels of psychological well-being and vice versa – Contrary to expectations, role balance was unaffected by RA – Significant decrease in non-vocational activities by participants during the last 10 years – Mental health status appears to be more important than physical function in performance of such activities – High number of activities performed correlated positively with scores on psychological well-being and vice versa

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Table 1 Continued


Aim of study

Rupp et al. (2004) The Netherlands

VandeCreek et al. (2004) USA

Ibn Yacoub et al. (2012) Morocco



Participants

Findings

To Descriptive quantitative, An outpatient centre multidimensionally cross-sectional design for rheumatology assess fatigue in Self-administered mailed and rehabilitation RA and to evaluate questionnaire, in Amsterdam or the impact of including MFI-20, at any of its fatigue on 100-mm VAS, RAND affiliated health-related 36-item Health Survey, outpatient clinics quality of life (part CES-D, DAS-28 of another longitudinal study)

490 RA patients (72.7% female)

To examine religious and non-religious coping methods among persons with RA and to identify positive and negative religious coping methods and personal characteristics associated with them To assess the aspects of health-related quality of life in Moroccan patients with RA

– Physical fatigue and RA-related pain have a statistically significant negative impact on physical functioning – Social functioning was negatively influenced by physical fatigue and reduced activity, RA-related pain and depressive symptoms – Mental health was negatively associated with mental fatigue and depressive symptoms – Physical fatigue, mental fatigue, depressive symptoms and RA-related pain were statistically significantly related to role limitations due to physical problems – Religious and non-religious coping were moderately correlated, suggesting that neither is completely independent of each other nor functionally independent – Scores of all negative religious coping subscales were positively associated with self-reported depressive symptoms – Persons with no (or few) depressive symptoms who reported that religion was important to them tended to make positive use of their religion as they coped with the emotional stress of RA

Descriptive quantitative, cross-sectional design Participants completed a mailed questionnaire that comprises a religious coping questionnaire, six subscales from a non-religious coping inventory and a depression scale

Recruited from division of rheumatology of a hospital

181 persons with RA (86% female)

Descriptive quantitative, cross-sectional design Questionnaire including VAS-Pain, DAS-28, HAQ and SF-36

Recruited from Department of Rheumatology of El Ayachi Hospital in the University Hospital of Rabat-Sale, Morocco

Convenience sample of 255 patients with RA (70.98% female)

– Both physical and mental aspects of HRQOL in RA patients were significantly deteriorated – The most affected subgroups of SF-36 were role limitations, role emotional, vitality and social functioning

GP, general practitioner; NA, not applicable; PT, physical therapist; QoL, quality of life; RA, rheumatoid arthritis.

The impact of RA on psychosocial well-being has also been relatively well-explored in both quantitative and qualitative studies, but mostly across Western counterparts. The psychosocial impact of RA was highlighted in 24 of the studies reviewed and can be discussed under five major different but not mutually exclusive themes.

also reflected that pain may be triggered unexpectedly (Ahlstrand et al. 2012). All five studies reported that this unpredictability of when the pain or fatigue would occur or what would trigger them disrupted daily life and made day-to-day planning a challenge. Participants reported that this had farreaching effects on their social lives and relationships, which made them feel sad, frustrated and angry.

The unpredictable nature of the disease

Struggling to balance time use and daily activities

Participants from four descriptive qualitative studies described patients’ experiences of fatigue as unpredictable, unexplainable and unresolving (Feldthusen et al. 2013; Hewlett et al. 2005; Nikolaus et al. 2010; Repping-Wuts et al. 2008). Similarly, Swedish participants in another descriptive qualitative study

Two qualitative studies reported that RA pain and fatigue caused an imbalance in the daily lives of their participants as they experienced difficulties in moderating activity levels according to pain and fatigue (Ahlstrand et al. 2012; Feldthusen et al. 2013). Participation in vocational activities often led to the

Impact of RA on QoL: psychosocial well-being



imbalance of not being able to engage in other valued activities. As a result, RA patients had to prioritize their activities and were often forced to postpone, reschedule or cancel plans (Repping-Wuts et al. 2008). Similar findings are also reported in quantitative studies. An American study by Katz & Morris (2007) assessed time use patterns among women with RA and found that as functional limitations increased, time use imbalance was more likely to occur. This, in turn, was found to be associated with lower life satisfaction and higher levels of depressive symptoms. In another quantitative cross-sectional study, Reinseth & Espnes (2007) found that over a period of 10 years, there was a significant decrease in non-vocational activities by Norwegian women with RA, and a low amount of vocational activities performed correlated with psychological distress. However, this study had inadequate statistical power with a small sample size of 45 participants, which reduced its reliability.

Disruption of social roles, relationships and activities

Apart from balancing daily activities, RA patients also had to balance their social roles and responsibilities while contending with fatigue, pain and disability imposed by RA (Ahlstrand et al. 2012; Coty & Wallston 2008; Da Silva et al. 2011; Feldthusen et al. 2013; Häggström & Nilsson 2009; Hewlett et al. 2005; Hughes et al. 2009; Ibn Yacoub et al. 2012; Kristiansen et al. 2012; Lack et al. 2011; Lempp et al. 2006b; Nikolaus et al. 2010; Plach et al. 2004; Repping-Wuts et al. 2008; Rupp et al. 2004). In several qualitative studies, participants reported feelings of frustration, disappointment, guilt and lowered self-esteem when their illness-related symptoms precluded them from meeting social role expectations and norms, which often led to changes in roles and division of labour (Feldthusen et al. 2013; Hewlett et al. 2005; Kristiansen et al. 2012; Plach et al. 2004). They also reported a lack of understanding from family members, friends and colleagues, which contributed to social withdrawals and breakdown of relationships, resulting in feelings of depression. Similarly, quantitative studies by Coty & Wallston (2008) and Rupp et al. (2004) also found that the illness had a significantly negative impact on role balance and social functioning, which led to lower levels of psychological well-being. On the contrary, one other qualitative study and two quantitative studies found that social relationships and role balance were unaffected by RA, and most patients still enjoyed an active social life (Haroon et al. 2007; Lempp et al. 2006b; Plach et al. 2003). The low reliability of the role balance measure (Cronbach’s alpha = 0.69) in Plach et al.’s (2003) study may have been responsible in part for the lack of significant effects.


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Loss of self-identity

Participants in a Danish study by Kristiansen et al. (2012) related how RA directly affected their physical identity as they fought to adjust to their physical limitations and deformities. Work was described as an important aspect to maintaining personal, social and professional identities and the loss of ability to work amounted to the loss of these identities. Lack et al. (2011), in particular, found that being unemployed signified a loss of power for men and affected their masculine identity. Through its impact on one’s ability to fulfil social roles, RA also affected an individual’s identity as a parent, carer and partner (Feldthusen et al. 2013; Lempp et al. 2006b). Furthermore, half of the participants in the study by Lempp et al. (2006b) revealed that RA threatened their public identity as well due to stigmatization or discrimination. These negative impacts on patients’ identities gave rise to feelings of hopelessness, powerlessness, depression and doubts about one’s abilities and existence (Feldthusen et al. 2013; Häggström & Nilsson 2009; Kristiansen et al. 2012; Lack et al. 2011; Lempp et al. 2006b). Negative emotions

Negative emotions are the most common finding in literature regarding the experiences of patients living with RA. Most quantitative studies measured psychological well-being in terms of anxiety and/or depression in RA patients (Cho et al. 2013; Coty & Wallston 2008; Ho et al. 2011; Katz & Morris 2007; Plach et al. 2003; Rupp et al. 2004). In two of these studies, the prevalence of depression and anxiety ranged from 35 to 65% (Cho et al. 2013). In a Singaporean study reviewed, Ho et al. (2011) found that 26% of participants presented with anxiety, 15% with depression and 11% with both symptoms. The wide variation in prevalence may have resulted from differences in the measurement instruments used, the criteria used to define anxiety and depression, and varying sample sizes in different studies. While depression was also commonly reported in qualitative studies, anxiety was not. Instead, other negative emotions such as frustration, anger, guilt, fear, shame and sense of hopelessness which resulted from the overarching physical and psychosocial impacts of RA were more frequently mentioned by participants in qualitative studies (Ahlstrand et al. 2012; Feldthusen et al. 2013; Häggström & Nilsson 2009; Hewlett et al. 2005; Hughes et al. 2009; Hwang et al. 2004; Iaquinta & Larrabee 2004; Kristiansen et al. 2012; Lack et al. 2011; Lempp et al. 2006b; Nikolaus et al. 2010; Plach et al. 2004; Repping-Wuts et al. 2008). Hence, using quantitative instruments that measure only anxiety and depression will not allow the wide range of emotional impacts RA has on patients to be captured.

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Coping with RA

The experiences of patients living with RA often encompass the process of coping, and this has been extensively explored in both qualitative and quantitative studies. Participants in nine qualitative studies reported several methods of coping with RA, including the use of various lifestyle interventions, personal resources and social support (Ahlstrand et al. 2012; Feldthusen et al. 2013; Häggström & Nilsson 2009; Hewlett et al. 2005; Hwang et al. 2004; Iaquinta & Larrabee 2004; Kett et al. 2010; Lack et al. 2011; Repping-Wuts et al. 2008). The use of interventions such as pacing, resting and prioritizing activities to deal with pain and fatigue are supported by Katz’s (2005) quantitative study. Support from family, friends and colleagues was perceived as important by participants in four qualitative studies (Ahlstrand et al. 2012; Bergsten et al. 2011; Hwang et al. 2004; Lack et al. 2011). This is supported by a quantitative study which found that social support encouraged the use of coping strategies and impacted coping effectiveness (Holtzman et al. 2004). In a Swedish grounded theory study by Bergsten et al. (2011), the use of personal resources to cope with RA was interpreted in terms of illness perceptions, self-confidence and self-efficacy. This is supported by other studies, in which participants similarly described the use of downward comparison, adopting a more positive attitude, determination, accepting the condition as well as relying on religion (Beaton et al. 2012; Englbrecht et al. 2012; Feldthusen et al. 2013; Hewlett et al. 2005; Hwang et al. 2004; Kett et al. 2010; Repping-Wuts et al. 2008). One quantitative study explored religious coping methods among persons with RA, and supported that persons with no or few depressive symptoms tended to benefit emotionally from religious coping. However, they also reported that a negative use of religion is significantly associated with depressive symptoms (VandeCreek et al. 2004). Findings of this study must be interpreted with caution as the instrument used to assess religious coping is limited to assess American JudeoChristian traditions. Negotiating the healthcare system

As RA is a chronic disease, patients become lifelong users of the healthcare services in order to manage their condition. Thus, the process of navigating and negotiating the healthcare system becomes an integral part of the experience of living with RA (Girard et al. 2002). This review identified only three qualitative (Brand et al. 2010; Lempp et al. 2006a; Ward et al. 2007) and three quantitative studies (Cunha-Miranda et al. 2010; Jacobi et al. 2004a,b) that focused specifically on this aspect of patients’ experience. These experiences were also briefly discussed in seven other qualitative studies that explored the


overall experience of RA. The findings can be categorized into four themes. Perceptions of medical treatment

Three studies (Iaquinta & Larrabee 2004; Kristiansen et al. 2012; Lempp et al. 2006b) found that patients held ambiguous feelings towards medications. While they perceived medical treatment as a precondition for maintaining functional capability, they were also worried about their long-term side effects and growing dependence on medications. Motivated by such concerns, some patients reported adjusting dose and frequency based on their own judgement. Patients also perceived pharmacological treatment as a process of trial and error that caused frustration and feelings of helplessness due to frequent changes in prescription and prolonged length of time required to elicit desired response. With respect to management of RA fatigue, patients generally held negative views as they felt that there was a lack of medication for fatigue and nothing else could be done (Hewlett et al. 2005; Repping-Wuts et al. 2008). Relationship and communication with healthcare professionals

Relationship and communication with healthcare professionals is an important factor that influenced patients’ experience with health care (Lack et al. 2011). Two studies found that patients valued positive relationships with health staff, wished to engage in more equal dialogues with them and wanted to receive clear and effective communication (Lempp et al. 2006a; Ward et al. 2007). However, participants in another two studies reported dissatisfaction as they felt that physicians tended to objectify patients and focused only on the physical symptoms, hence missing out on psychological support (Brand et al. 2010; Kristiansen et al. 2012). Furthermore, most patients did not discuss fatigue with doctors and felt that it was dismissed when they did so (Feldthusen et al. 2013; Hewlett et al. 2005; Repping-Wuts et al. 2008). Quality of healthcare services

Quality of healthcare services is generally dissatisfactory, with reasons cited by participants in the studies including short consultation visits, restricted model of care, limited choice of rheumatologists, inadequate processes for continuity of care and restricted access to medical professional in times of flare (Brand et al. 2010; Iaquinta & Larrabee 2004; Ward et al. 2007). Apart from dissatisfaction with services, certain healthcare services, such as allied health care, home care and psychosocial care, were also found to be underutilized in a quantitative study (Jacobi et al. 2004b). Need for more information

Most participants reported receiving inadequate information and would appreciate additional information support from


healthcare professionals (Brand et al. 2010; Kett et al. 2010; Repping-Wuts et al. 2008). Similarly, participants in a quantitative study conducted in the Netherlands identified the provision of information as an aspect of inadequate quality in RA care (Jacobi et al. 2004a), while 78% of participants in a Portuguese study expressed additional needs in information (Cunha-Miranda et al. 2010). Information on the course of symptoms, self-management strategies, treatments and treatment options, and side effects of medications are among the areas identified by participants as inadequate in these five studies.

Discussion All the quantitative studies reviewed adopted retrospective, cross-sectional designs in their data collection. As RA is a progressive chronic illness that could either worsen over time, or improve due to treatment, these studies may not yield a truly representative result of an RA patient’s dynamic experience of living with RA. For example, in Katz & Morris’ (2007) study that assessed time use patterns among women in RA, the participants were asked to retrospectively estimate how much time they spent in a typical day on 16 activities. Not only does this present a possibility of inaccuracy in retrospective reporting, the participants’ time use pattern when their condition is well under control of medications may drastically differ from when they will first diagnose with RA and were in the process of adjusting to the illness. Similarly, in the quantitative crosssectional study by Reinseth & Espnes (2007), they studied participants’ participation in non-vocational activities by examining the activity patterns of these participants over the past 10 years. Findings from these studies could have been strengthened if a longitudinal study design had been adopted instead. While a review of the literature showed that the impacts of RA on patients’ physical and psychosocial well-being and their coping have been relatively well-explored in both quantitative and qualitative studies, majority of the reviewed studies were conducted in Western countries (35 of 40 reviewed articles). Relatively few studies were conducted in the Asian countries/ context. This is of significance as culture plays an important role in influencing patients’ illness experiences and needs, too. For example, Kett et al. (2010) found that self-management strategies differed between white British and Afro-Caribbean participants and South Asian participants, and such differences appeared to stem from differences in the perceived causes of RA. This lends evidence that self-management strategies may be influenced by factors such as ethnicity and culture. Therefore, transferability of the results of these studies may be limited as individuals with different cultures may have different experiences despite being in the same situation/setting (Polit & Beck


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2010). Only by investigating such differences in future studies can we provide relevant and culturally sensitive care for our patients. Furthermore, although studies have explored the various ways in which patients deal with their RA, the effectiveness of these coping methods was inconclusive. A descriptive qualitative study by Hewlett et al. (2005) reported that some participants had limited success with self-management strategies, but another study in this review found that coping effectiveness was positively related to health perception (Englbrecht et al. 2012). Therefore, further studies are also needed to evaluate effectiveness of coping methods to better understand patients’ needs. This review also revealed that limited studies have focused on exploring RA patients’ experiences of negotiating the healthcare system, or their healthcare support needs, despite it being an integral part of their lives. As such, relatively little is known about the experiences of adults with RA in dealing with the various healthcare services and whether these existing services are adequate in addressing their needs. Furthermore, different countries have different healthcare systems, such as care delivery model (rheumatology nurse vs. rheumatologist), healthcare financing systems and dissemination of medical information, which may influence patients’ perceptions of their illness experience. In order to improve the quality of healthcare services and enhance the management of RA, it is important to appraise the healthcare services provided to RA patients in one’s own unique settings to ensure its maximum efficiency in meeting the needs of the patients.

Limitations of the review There are several limitations of this review. First, the articles reviewed were restricted to English journal articles that were published in the mentioned databases. Second, although this review limited articles to those that were published within the last 11 years, the data in some of the quantitative studies reviewed were collected more than 10 years ago, which renders the findings relatively outdated and should be interpreted with caution. Third, as studies that contained interventions were excluded, baseline data about RA patients or participants in control groups were not included in this review for comparisons.

Implications for nursing and health policy Healthcare professionals should enhance the patient education provided to RA patients, including proper pain management strategies, cognitive strategies, preventive measures and techniques for overcoming physical limitations. This would help patients feel more in control of their pain, improve their physical function and reduce psychosocial distress. They should also

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discuss with patients ways in which they can plan their daily activities and deal with the unpredictability of RA so that they can feel more in control of their lives. Family involvement in these discussions and education should be strongly encouraged so that family members can better empathize and provide active support for the patients throughout their illness experience. In addition, support groups can also be conducted by nurses for RA patients so that they can meet people with similar experiences, share coping strategies, have an outlet for emotional release, and gain confidence and self-efficacy from meeting other RA patients who have successfully coped with their everyday lives. As RA patients view relationship with healthcare professionals as an important factor that influences their experience with health care, healthcare professionals should take effort to establish a positive relationship with their patients. Healthcare professionals can do so by actively involving patients in the discussion of their treatment plans and communicating clearly with them. Apart from these, it is important that healthcare professionals pay more attention to the emotional and psychological well-being of patients by providing appropriate support such as empathetic listening and validating their suffering, instead of focusing only on physical symptoms. Furthermore, healthcare professionals can provide additional informational support to patients to fill in any knowledge gaps and reduce their anxiety and fear of what they do not know. Furthermore, knowing that patients have worries and fears about the side effects of medications, healthcare professionals could try to anticipate their worries and fear and encourage them to share their feelings so as to address/ease their concerns when needed. Provision of constant reassurance is essential to make sure patients remain compliant to their medications. Lastly, policy makers and healthcare organizations need to look into ways to enhance the healthcare services to better suit RA patients’ needs, such as improving processes for continuity of care and enhancing access to medical professional in times of flare.

Conclusion This review examined adult patients’ experiences of living with RA and their support needs. RA has adverse effects on QoL due to its negative impacts on the physical and psychosocial wellbeing of patients. In order to cope with the impacts, patients used various methods of management. However, the effectiveness of their coping mechanisms and any further support needs are unclear. Interventions can be developed to address patients’ concerns in order to empower them to better manage their condition and have a more pleasant experience with the healthcare services. In summary, a holistic understanding of patients’


experiences with the disease, involvement with the healthcare system and healthcare support needs is crucial to provide quality care and ultimately improve the QoL of RA patients.

Acknowledgements We appreciate the great support from Ms Lee Seok Hong, Medical Library, National University of Singapore, for providing guidance on literature search.

Author contributions HHG, CWCS, CSCL and PLW: Study design. PLW: Data collection. PLW, HHG, CWCS and CSCL: Data analysis. PLW, HHG, CWCS, CSCL and PPC: Manuscript preparation. All authors identified the need for and conceived the study design.

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Polymorphisms of RAD51B are associated with rheumatoid arthritis and erosion in rheumatoid arthritis patients.

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Lymphocyte depletion in patients with rheumatoid arthritis.

Sleep problems in patients with rheumatoid arthritis.

Methotrexate in older patients with rheumatoid arthritis.

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Hearing status in patients with rheumatoid arthritis.

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Anemia in patients with juvenile rheumatoid arthritis.

Skeletal status in patients with rheumatoid arthritis.

Pain management in patients with rheumatoid arthritis.

Methotrexate hepatotoxicity in patients with rheumatoid arthritis.

Osteoporosis diagnostics in patients with rheumatoid arthritis.

Bone loss in patients with rheumatoid arthritis.

Inflammatory markers in patients with rheumatoid arthritis.

Osteoporosis in patients with rheumatoid arthritis.