Patients’ perceived health information needs in inflammatory arthritis: A systematic review

https://doi.org/10.1016/j.semarthrit.2018.07.014Get rights and content

Abstract

Objectives

To identify the breadth of the literature regarding patients’ perceived health information needs related to inflammatory arthritis care.

Methods

A systematic scoping review of MEDLINE, EMBASE, CINAHL and PsycINFO was performed to identify relevant articles (1990 -2016) examining patients’ perceived needs relating to health information in inflammatory arthritis. Data and themes were identified and categorised and risk of bias assessed.

Results

Twenty nine studies (11 quantitative, 14 qualitative and 4 mixed methods) from 4121 identified articles were relevant for inclusion. Most focussed on rheumatoid arthritis. Key findings included: (1) Reasons for seeking health information often focussed on gaining ownership over their condition and facilitating self-management. (2) Demographic differences in information needs were inconsistent, but women and younger patients generally reported more needs. (3) Desired information content was broad, and included targeted and practical information covering disease treatment and psychosocial wellbeing. (4) Preferred information delivery method was consultation with a Rheumatologist; however group sessions had advantages for psychosocial issues while written information provided useful supplementation. (5) Barriers to meeting health information needs were around timely access.

Conclusions

Patients with inflammatory arthritis have high information needs, desiring practical and individualised information. When developing strategies to meet patients’ information needs, aligning patient expectations with delivery methods that are accessible, cost-effective and flexible may help to optimize patient outcomes.

Section snippets

Background

Chronic inflammatory arthritides (IA), such as rheumatoid arthritis (RA) and ankylosing spondylitis (AS) are associated with pain, disability and reduced quality of life [1]. Care is complicated by disease flares and progression, complex therapeutic regimens, treatment side effects and impact on everyday life including physical, social and psychological wellbeing [2], [3], [4], [5].

Optimal management of IA is patient-centred and holistic [6]. This requires patient involvement and provision of

Methods

A general, open review question was deliberately used to enable synthesis of an expected broad literature relating to patients’ health information needs. We used a scoping review approach, as described by Arksey and O’ Malley [23], reinforced by systematic reviewing principles, to identify and analyse the evidence. This strategy was used to capture the breadth of the topic, and allow a wide-ranging exploration of the patients’ perspective, map the existing literature and identify gaps in the

Results

The search strategy returned 4121 articles. Seventy-nine studies were identified as potentially relevant based on title and abstract screen. Fifty of these studies (63.3%) were subsequently excluded on the basis of full text assessment. Reasons for exclusion (note > 1 reason applied to some studies) were most commonly not assessing health information needs, failing to report the patient perspective (i.e. individual patient-level data) or an inability to extract data specifically for the

Discussion

This review found 29 studies identifying factors related to patients’ perceived health information needs in IA. The key themes identified were: reasons for seeking health information, demographic differences in needs, preferred content and delivery modes and barriers to meeting health information needs.

We found that patients sought health information to gain ownership over their condition and facilitate self-management and co-care. Similarly, in other patient groups, health information seeking

Declarations of interest

None.

Funding

This work was performed in partnership with Move: muscle, bone & joint health and supported by a partnership grant from the organization. L.C is the recipient of an Australian Postgraduate Award and Arthritis Foundation Scholarship. AMB is the recipient of a NHMRC TRIP Fellowship (1132548). A.E.W is the recipient of NHMRC Career Development Fellowships (Clinical Level 2, 1063574).

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