Patients’ perceived health information needs in inflammatory arthritis: A systematic review
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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2020, Best Practice and Research: Clinical RheumatologyCitation Excerpt :Incorporating advice borne from experience can richly inform ‘what’ and ‘how’ care should be delivered in a local system. With the voice of the lived experience augmenting clinical experience and healthcare evidence concerning a particular condition, the resulting care is more likely to be acceptable to all involved and better reflect care that is high value [39–42]. Critically, satisfaction of receivers of care is more likely to be associated with effective and active participation in their healthcare requirements [43,44].
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