It is important that patients’ broader health needs are addressed
Rheumatoid arthritis and seronegative spondyloarthropathies are the most common types of inflammatory arthritis. They cause pain, joint damage and progressive functional loss, which limit participation in life and constitute a significant disease burden.1,2 Over the past decades, great advances in management, with the availability of corticosteroids, synthetic disease-modifying antirheumatic drugs (DMARDs) and biological DMARDs, have significantly improved the disease control and outcomes. The guidelines, whose algorithms focus on drug prescription to achieve remission of disease,3,4 support everyday treatment. However, while they provide direction for the use of DMARDs, they do not consider the patients’ broader health needs.
When optimising outcomes for people with inflammatory arthritis, there are significant discrepancies between the patients’ perspectives of their own health and those of their health care professionals.5 To promote successful clinician–patient partnerships and shared decision making, we need to understand patients’ priorities and perceived needs and deal with the areas where these do not align with current health care guidelines and policies. In this article, based on the results of a systematic scoping study,6 we consider the needs of people with inflammatory arthritis and propose options to improve their situation. While the concept of patient-centred care is not a new one for effective chronic disease management, it is important for patients with inflammatory arthritis given that this disease commonly affects people from a younger age compared with other chronic health conditions. Health policy and practice strive to deliver patient-centred care; however, actual care delivery falls short of peoples’ needs.6
What do people with inflammatory arthritis need?
Therapies to relieve symptoms
People with inflammatory arthritis want treatments that reduce their pain and fatigue, prevent joint damage and help them maintain their mobility, function and independence.6 Although pharmacological treatment has improved significantly over the past decades, it is far from perfect, with individual medications failing to attain remission in most patients7 and leaving them feeling that their needs are not fully met. These needs align with the principles of contemporary practice: “treat to target”; however, patients do not always appreciate the rationale and need a better understanding of treatment options, particularly relating to drug safety and toxicity.6 Given this lack of understanding and a need for symptom relief, many patients seek other forms of supplementary care, including complementary and alternative therapies (CAM), despite limited evidence of efficacy.
Information to enable decision making and self-management
Patients’ perceived needs go beyond the use of medications; their involvement in decision making is increasingly viewed as important by both patients and health care providers and improves compliance, health outcomes and satisfaction.8 However, patients often perceive that the information they receive is suboptimal.6 Moreover, they want education regarding their disease and potential therapies so they may gain control of their health, learn strategies to manage their condition and plan for the future.6 This is key in inflammatory arthritis, where disease impact is often maximal in peak income-earning and family-planning years. Patients want strategies to reduce pain and methods to adapt to functional limitation.6 In addition, they want to know the effects of these strategies on their daily lives, such as implications for driving and dietary restrictions.6 They also want precise instructions about exercise and physical therapies, and self-help strategies to manage the emotional effects of the disease.6 In sum, patients need individually tailored, practical information delivered in a constructive manner; nevertheless, they feel these areas are often overlooked by clinicians.6
Access to health care professionals
It is important that patients have access to understanding, knowledgeable, thorough and empathic practitioners who take a holistic approach to care, do not rush consultations, provide continuity of care and are easy to access, particularly during a disease flare.6 Moreover, they need access to skilled allied health practitioners — such as physiotherapists and occupational therapists — to improve function, mobility and psychological wellbeing.6 Long waiting times are seen as a significant obstacle to optimal management.6
Broader health needs
Being socially connected, employed and having financial security are essential needs for people with inflammatory artrhritis,6 and some patients are frustrated by the lack of understanding of their condition by their family, friends, employers and society in general.6 Mobility impairments raise practical concerns regarding parking and transport options. Moreover, employment and job security are paramount to a person, affecting financial security, self-esteem and social connectedness.6
How can we manage these needs?
Improved communication and education on the disease and its impact on social functioning are important for the promotion of patient-centred care. Therefore, patients need to gain the knowledge and skills to manage their condition and better participate in shared decision making with their health care providers. This can be helped by providing decision aids; encouraging shared care models between medical specialists, primary care physicians and allied health professionals; and implementing interventions to facilitate question asking during consultations.9 In addition, practitioners should be trained to deliver patient-centred care and empower shared decision making during consultations.10 Better relationships will enable a non-judgemental discussion regarding medication use, compliance concerns, CAM use, practical strategies for self-care and pain coping, and consideration of psychosocial problems that have an impact on health behaviours and mental wellbeing.
Patients with inflammatory arthritis should have ready and timely access to knowledgeable health care practitioners, particularly rheumatologists, and skilled allied health providers. However, access to rheumatologists is limited in Australia, particularly in rural sectors.11 In addition, allied health providers receive little formal education in rheumatology, resulting in workforce capacity limitations.12 To manage this burden–service gap, alternative methods of health care delivery have been proposed in Australia and internationally.13 These methods focus on building workforce capacity and expanding workforce roles (eg, advanced scope roles, nurse practitioner roles), providing community-based shared care services and supporting contemporary service and information delivery to consumers through leveraging digital technologies, such as mobile and electronic health applications.10,14 Peer contact for patients may also assist in providing complementary information and education — often more effectively — about coping with the emotional aspects of this condition and providing social connections.6
Developing more effective and efficient models of care may be facilitated by involving patients in their planning.15 Health information materials need to be produced in collaboration between health professionals and consumers, to ensure they are relevant, targeted to patients’ needs, and disseminated appropriately.15 Involvement of patient representatives in developing clinical practice guidelines that manage the patient holistically by incorporating their perspective may be more closely aligned to their perceived needs.15 Investigation of patient-focused strategies, providing interventions tailored to different care settings, patient populations, economies and health care systems may provide novel, effective solutions.15
It will be more challenging to devise novel approaches to meet the broader health needs of people with inflammatory arthritis. Health promotion interventions (such as mass media campaigns and community events) may help bridge gaps in public understanding6,10 and encourage people with inflammatory arthritis to maintain social connectedness, for which peer support networks — traditional face-to-face and digitally-enabled — may be helpful.16 Job security may be optimised by liaison between health care practitioners and the workplace to facilitate job adaptation, including physical environmental aspects, such as parking and access, and flexibility in working hours.6 Moreover, patients identify cost, locality of services, compliance and lack of time as barriers to care.6 To manage these barriers, health care services may consider more flexibility in the provision of care (eg, after-hours services, community-based centres, telehealth services) and better coordination with different health care professionals, employers and allied health services.
Conclusions
There is an urgent need to direct future research initiatives on the efficient and effective management of inflammatory arthritides. Improved collaboration between Australian researchers, policymakers, funding bodies and patients may deal with these gaps in knowledge and improve care outcomes. While disease control using the “treat to target” paradigm is essential, to the individual, pain control, maintenance of employment and financial security are of paramount importance. Cooperation between patients, clinicians and policy makers to implement novel strategies to help patients remain productively in the labour force is required to improve this situation.

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