Introduction

Osteoarthritis(OA), the most common type of arthritis, affects approximately one in ten adults[1]. The impact of OA is significant with 80% of those with knee OA reporting limited mobility and 25% reporting trouble with activities of daily living[2]. As OA has no cure, and its prevalence increases with age, it is predicted to be the fourth leading cause of disability by 2020[3], with considerable socioeconomic impact. OA is currently estimated to account for 1 to 2.5% of the gross national product of several countries, including the United Kingdom, France, Australia, Canada and United States of America[4].

To address the growing burden of OA, numerous guidelines for its management have been developed[5–7]. These recommend non-pharmacological interventions such as exercise, weight loss, assistive devices, the provision of effective and individualised information, as well as, pharmacological treatments including simple analgesics and intra-articular corticosteroid injections. Joint replacement surgery has also been recommended for suitable patients[6]. However, despite consensus between the multiple guidelines, clinical practice does not adequately reflect the recommendations: approximately one third of individuals with OA fail to receive recommended care[8],[9]. This is further compounded by a sizeable proportion of patients with OA not participating in recommended self-care strategies[10].

The uptake and adherence to clinical practice guidelines by clinicians and effective self-care strategies by patients is challenging and determined by a complex interplay between health care providers, the patients and resources provided within the health care system. The successful implementation of core OA guideline recommendations around education and self-management are largely dependent on patient engagement[6]. In order for patients to actively participate in their management, they require an understanding of their condition. The current EULAR guidelines for non-pharmacological management of hip and knee OA recommend the regular provision of individualised health information specifically addressing the nature of OA, its pathogenesis and its conseqences[11]. Despite this, previous studies have identified shortcomings in this with only 25% of patients with OA receiving disease-specific education[8,12]. This apparent gap in health information delivery is reflected in the poor health literacy regarding OA, with 30% of people with physician-diagnosed arthritis not being aware of the type of arthritis they have[13]. This is concerning as patients with low health literacy have been demonstrated to have worse outcomes and poorer access to health services[14]. Thus a mismatch between patients’ perceived health information needs and the information provided may contribute to poor uptake of guideline recommendations and less optimal health outcomes. Therefore, we aimed to review the existing literature regarding patients’ perceived health information needs relating to OA.

Methods

We performed a systematic review of published data to identify what is known about patients’ perceived health information needs related to OA within a larger project examining the patient perceived needs relating to musculoskeletal health[15]. Given the breadth of the topic and to allow a comprehensive exploration of the patient perspective, a systematic scoping review was performed based on the framework proposed by Arksey and O’Malley[16]. Systematic scoping reviews are aimed at mapping key concepts, reviewing different types of evidence and identifying gaps in the current literature[17,18].

Results

Overview of included studies

The search returned 2786 studies, of which 30 articles met inclusion criteria[22–51]. A PRISMA flow diagram detailing the study selection is shown in Fig 1. The descriptive characteristics of the included studies is shown in Table 1. The majority of studies were conducted in the United Kingdom[25,30,35,36,39,42,44,47,49,50], with the remainder from Europe[22,26,28,31,32,37,41,45,46,48], North America[27,33,43,51], South-East Asia[29,40], Australia[38], Middle-East[23] and an unknown source[24].

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Fig 1. PRISMA diagram.

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Iterns for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(7): e1000097. doi:10.1371/journal.pmed1000097. For more information, visit www.prisma-statement.org.

https://doi.org/10.1371/journal.pone.0195489.g001

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Table 1. Overview of studies.

https://doi.org/10.1371/journal.pone.0195489.t001

Participants were classified as having OA using American College of Rheumatology (ACR) criteria in 3 studies[29, 32, 34], radiographic change and pain in 4 studies[30, 40, 44, 49], self report in 6 studies[24, 27, 35, 39, 43, 47], chart review in 3 studies[31, 33, 46], clinical diagnosis in 4 studies[36, 37, 42, 48, 50], and by undefined methods in 8 studies[22, 23, 26, 28, 38, 41, 45, 51].

There were 16 qualitative studies[22–26, 28, 29, 31, 35, 36, 38, 42, 44, 46, 49–51]; 10 used semi-structured interviews[23, 27–31, 36, 40, 46, 49], 7 focus groups[23, 26, 34–36, 38, 42], 3 in depth interviews[24, 39, 44], 2 used diaries[39, 49] and 1 used ethnography [51]. The 11 quantitative studies used questionnaires[30, 32–34, 39, 41, 43, 45, 47, 48] and surveys [37]. Three studies used mixed methods[30, 39, 50].

While the size of study populations ranged from 5 to 4478 participants, most study populations were of modest size, with 22 studies having less than 100 participants[22–29, 31, 32, 34–36, 38–40, 42, 44, 46, 47, 50, 51]. Eight studies had more than 100 participants[37, 41] [30, 33, 43, 45, 48, 49]. The included studies had a female predominance, with 2 studies including only females[23, 24] and 22 studies having more females than males[22, 26, 28–37, 40–43, 47–49, 51, 52]. The mean age of participants in the included studies was 62 with an age range from 21–100 years of age.

Results of review

Three main areas of patient perceived health information needs for OA emerged from the included studies.

Patients’ perceived need for clear communication of health information (Table 2).

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Table 2. Patient perceived need for clear communication of health information.

https://doi.org/10.1371/journal.pone.0195489.t002

Four studies reported that patients were dissatisfied with the unclear explanations provided by healthcare providers regarding their OA[22, 25–27]. Barker found that many terms used in OA were misunderstood by patients or had different connotations, such as “rheumatism”, “inflammation”, “cartilage” and “rehabilitation”[25]. Moreover, patients reported negative connotations with a number of words and phrases. For example, the term “effusion” was perceived to mean “fusion of bones” and patients did not want this associated with their arthritis. Furthermore, Jinks found that patients perceived “wear and tear” as being linked to ageing and reinforced a lack of effectiveness of treatments[39]. Four studies[22, 25–27] reported patients’ preferences with communication style, and found patients desired clear communication of individualised care plans from their health care providers[25–27]. Patients also reported that inappropriate gestures generated anxiety and that silence from the practitioner was interpreted as the doctors’ “powerlessness”[26].

Patients’ perceived need to obtain health information from a variety of sources (Table 3).

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Table 3. Patient perceived need to obtain health information from a variety of sources.

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Information provided by health professionals. Twelve studies described patients’ utilisation of health professionals for information[23, 24, 26–29, 36–38, 42, 44, 46]. Patients sought health information from professionals with specialist knowledge of arthritis, such as physicians, other healthcare providers in clinics and nurse practitioners[24, 42, 46]. Some patients generally thought the advice and response to questions from their healthcare providers were good[26], however, they wanted more convenient access to healthcare practitioners[27]. Conversely, some patients were dissatisfied with the perceived lack of understanding and the type of information received from some healthcare practitioners[23, 36]. Also, patients have reported receiving contradictory information and advice from different healthcare providers, which was perceived as a lack of knowledge [36]. Patients wanted more time with the healthcare provider[28, 37] or more information sessions to provide further guidance and support[44]. They also wanted healthcare providers to be more forthcoming in giving health information[26]. Furthermore, some patients noted a difference in information provision between private and public sector doctors[23].

Information obtained from the Internet. Patients’ use of the Internet for health information was examined in 7 studies [29, 33, 38, 42, 51]. Patients used the Internet as a source of information [26, 38, 51] and to share their experiences with others [51]. In particular, patients accessed the Internet when information needs were not met by other sources [33, 42]. Most interest with using the Internet was from patients less than 56 years of age and those with routine Internet use [33]. However, Ilic found that although accessing medical information from the Internet was convenient, patients were concerned about the credibility and reliability of online information [38].

Information from other media including print and television. Patients’ use of other media, including printed materials, television and video recordings, for health information was evaluated in 6 studies[24, 29, 31, 35, 41, 47]. Baird reported that patients sought information about arthritis through print media or television[24], particularly if they felt they had insufficient knowledge about OA[31]. Cuperus[31] and Grime[35] found that some patients perceived potential from information booklets and read them, while Long reported that many patients found booklets most suitable for delivering information[41]. Furthermore, Saroop-D’Souza found that 80% of participants found an information video useful but only 48% found it relevant[47].

Information provided support groups, family and friends. Patients’ use of support groups, family and friends for health information was identified in six studies[23, 24, 28, 29, 37, 44]. Patients considering operative management sought information from other people who previously had a total knee replacement, and that learning from others’ experiences provided them with hope[23, 28, 44]. Patients also sought information about arthritis from classes or listening to friends[24]. Hofstede found that advice from family and friends facilitated non-surgical treatment options for patients with OA[37].

Gaps in the source of information. Two studies reported on patient perceived gaps in the health information sources[27, 40]. Kao found that patients did not know where to find information about OA and that there were few informative tools to help patients understand their disease[40]. Bayliss reported that patients preferred written information to aid understanding and recollection of information[27].

Patients’ perceived needs of health information content (Table 4).

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Table 4. Patient perceived needs of health information content.

https://doi.org/10.1371/journal.pone.0195489.t004

Demographic variations in content requirements. Four studies explored the demographic variation in OA health information needs[32, 43, 45, 48]. Dragoi[32] and Mora[43] evaluated the gender differences in health information needs and found that females had higher educational needs[32]. In particular, women asked more questions about their condition, operative management options and the risks and benefits of surgery[43, 45]. Stark reported that patients with higher education and those with depression or anxiety who were awaiting hip joint replacement surgery had more unfulfilled knowledge expectations and wanted more information[48].

Gaps in information about diagnosis. Five studies examined patients’ perceived gaps regarding diagnostic information[26, 32, 42, 46, 48]. There were conflicting data about the satisfaction with the amount of information provided, with some patients feeling well informed about the cause, symptomatology and pathomorphology of OA[46, 48], whilst other patients wanted more information about the origins of disease and more explicit details about the seriousness of the diagnosis[26]. Dragoi and Mann reported that patients expressed interest in receiving education about their arthritis[32, 42]. Some patients wanted more information about prevention of OA in their offspring[26].

Gaps in information about management options. Fourteen studies explored patients’ perceived gaps in OA management information[23, 26, 28, 30, 35–37, 39, 42, 43, 45, 46, 48, 51]. Clarke reported that patients were dissatisfied with the amount of information provided from medical practitioners about management options[30]. Patients wanted information about management strategies for OA, particularly about medications[26, 36], assistive devices[36], diet and weight management[37, 42], exercise therapy and occupational therapy[36, 37, 42], symptom control[42, 45] and self-management strategies[35, 51]. They also wanted information regarding local services[36], support groups[46] and financial support[45, 48]. Moreover, patients felt that they lacked information about surgical options[23, 41, 42], especially details about joint replacement surgery[23, 28, 43], and if provided, patients felt that medical advice about arthroplasty came very late[23]. Patients also wanted more information about recent developments in the management of OA[26]. Brosseau and Mann found that patients required more OA management information to help them cope with daily life and self-manage their OA[26, 42]. Patients reported that more information enabled improved communication with health care practitioners, which empowered them to be more involved in the management of their disease[26].

Gaps in information about prognosis. Patient perceived gaps in prognostic information was evaluated in 2 studies[26, 42]. Baumann found that patients required more information about the prognosis and progression of OA[26]. In particular, Mann reported that patients desired prognostic information at the time of diagnosis or early stages of disease[42].

Discussion

To improve the uptake of OA clinical practice guideline recommendations by patients and to support co-care and promote patient self-management, the mismatch between patients’ perceived health information needs and the current delivery of information needs to be better aligned. In this scoping review, we identified a number of areas of patients’ perceived need for health information: (1)the need for clear communication of information, (2)the need to obtain information from a variety of sources and (3)the content needs of health information.

Patients consistently desired information to be delivered using clear and simple language, presented in a positive and constructive manner[22, 25, 26]. However, the language used by healthcare providers to convey health information is frequently misinterpreted by patients[25], and associated with negative connotations[25, 39]. These findings are similar to previous research evaluating medical terms used in back pain care[53]. Thus, in supporting patients with OA, healthcare professionals and information providers cannot assume patients’ comprehension or that the terms used are acceptable to patients. Given the misunderstandings and potential problems related to the use of words, such as “degenerative change”, future initiatives to develop information tools for OA should include patients. This may allow alignment of the language used to the appropriate level and improve the healthcare provider-patient relationship, enabling better patient engagement in the active management of OA. Whilst there are recent international consensus recommendations about what patients with hip and knee OA need to know, these guidelines have been determined largely by clinician researchers and may not have sufficiently incorporated the patient perspective to optimise patient engagement: further research is required[54].

Patients obtain health information from a variety of sources[23, 24, 27–29, 31, 33, 35, 38, 42, 44, 46, 47, 51]. This review found that patients sought information about OA from healthcare providers with specialist knowledge of arthritis[24, 27, 29, 38, 42], despite voicing concerns about the difficulties with access to medical practitioners[27] and the quality of information provided[23, 36]. Medical practitioners have identified a lack of availability of quality resources and time restraints as a major barrier to providing OA health information[42, 55]. Given that patients are receptive to receiving information from other healthcare providers including nurse practitioners[24, 42, 46], other avenues of health information from services allied to medicine may be utilised. This can provide more convenient and cost-effective access to health information, which has also been used in other conditions such as rheumatoid arthritis[56, 57].

Other sources of information that patients utilise include print media and television[24, 29, 31, 41, 47], support groups or from family and friends[23, 24, 28, 29, 37, 44]. Thus, it is clear that patients obtain information from a variety of sources, both healthcare related and lay sources. This may be due to dissatisfaction with the amount and content of information provided from an individual source, or it may be that patients want information from complementary sources to provide a more individualised and holistic approach to their disease. In particular, patients perceived the use of lay sources for information regarding operative management to be invaluable[23, 44], as patients sought information from people with previous experience, and this information was deemed more relatable and credible. Optimising information provision from a variety of complementary sources may improve patient understanding of the condition and enable more efficient information delivery, reducing dependence on primary healthcare doctors.

Furthermore, patients expressed interest in using the Internet to obtain information, particularly when they have otherwise unmet health information needs[29, 33, 38]. However, they have concerns about the credibility of information[38]. It is possible that as the use of technology becomes more widespread, and computer literate individuals age, the use of the Internet as a source of information will increase. Patients desire empowerment and are keen to be actively involved in their own health; therefore they seek different methods of health information delivery to address a diverse range of perceived needs. Thus, the use of online communities is becoming more common[58, 59], and provides an avenue for patients to obtain health information that is accessible and allows patients with similar experiences to share self-management strategies and advice that is holistic and individualised[51, 59–61]. It also provides social support and interaction between patients with similar shared experiences[51, 58, 59, 62]. There is emerging evidence that Web-based resources providing health information to patients with OA have improved the quality of life of its users and supported self-management[63]. Further research is required to explore and integrate the role of developing technologies in the provision of more effective and efficient health information, as despite the availability of the internet, information content needs persist.

Several studies in this review explored the perceived needs of health information content. These identified demographic differences in the perceived health information needs of patients with OA. Females had consistently higher health information needs than males[32, 43, 45]. Whilst this finding may be due to sampling bias with a predominance of female participants in the included studies, this is congruent with other studies evaluating patients with a variety of arthritides[32, 64]. These studies have demonstrated that women show more interest in disease management than men, and that men with arthritis prioritise work commitments over health concerns which may affect their perceived health information needs[32, 64]. Furthermore, those with higher education[48] had more unfilled health information expectations. The review included studies over a wide timeframe—some 26 years. As there was limited data, we were limited in our ability to examine changes in health information needs over time as a primary aim of the review and in a systematic manner. Nevertheless, the available data suggest that the nature of health information needs did not change over the study period. Surprisingly, none of the included papers identified the role of digital technologies in delivery of health information, although it would be reasonable to expect that an evidence in this area will emerge in time. There is limited data examining the influence of other variables, such as socioeconomic status and medical co-morbidities, on the health information needs of patients with OA. Further studies are needed to assess whether addressing the health information needs of subgroups that desire more information translates into improved health outcomes in OA. Health information needs tend to differ among people with back pain according to level of disability[65], so it is likely that the same issue applies to people with OA, although primary research should be undertaken to confirm this hypothesis.”

Patients have also identified specific gaps in the provision of health information. Despite the current recommendations for the provision of health information to patients with OA[11, 54], patients have reported dissatisfaction with amount and clarification of knowledge[22, 23, 26, 36, 48, 49], particularly about management options, the prognosis of OA and prevention of worsening OA[26, 28, 30, 36, 39, 41, 44, 45]. In particular, patients have observed an apparent paucity of information about assistive devices and exercise therapy, which is perceived as a lack of recognition of the functional limitations of the disease by healthcare providers[36]. This underscores the misalignment in the perceived needs between healthcare providers and patients[66, 67]. Healthcare practitioners tend to underestimate the impact or severity of patients’ symptoms, and prioritise management options differently to patients [22, 42, 66–68]. This may be a reflection of the limitations of healthcare providers and their lack of knowledge of the benefits of non-pharmacological and non-surgical care options for OA [69, 70]. Consequently, the priorities and perceived needs of patients may not be addressed, thus impeding on the patient’s adherence to treatment recommendations and their willingness to actively participate in their own care.

There are a number of limitations to this review. Firstly, despite utilising a comprehensive and inclusive search strategy, only 30 studies were identified to be relevant for this scoping review. This highlights an urgent need for future research initiatives to examine patients’ perceived needs for health information for osteoarthritis. Also, as few studies directly examined the patients’ perspective of their health information needs regarding OA, the categories of need emerging were extrapolated from heterogeneous studies evaluating different study questions with varied populations. Most of the included studies have small sample sizes, consist mainly of women with hip or knee OA and were conducted in developed, English-speaking countries, mainly the United Kingdom. Additionally, the majority of studies recruited participants from hospital settings or general practices, rather than community centres. Therefore, the study populations may not be representative of all community dwellers with OA or transferable to people in low and middle-income economies, which may limit the generalizability of the results. Research addressing consumers’ health information needs related to OA in the context of low and middle income settings and with consideration to community dwelling individuals should be prioritised and would support complementary efforts undertaken by the World Health Organisation in this area. Some of the included studies are over 10 years old, and may not reflect current patient health information needs. Furthermore, many of the included studies were susceptible to bias, and thus were of limited quality. However, as this was a scoping review, the main concern relates to a failure to capture populations that were not included and needs that were not addressed in any study directly. This review has been focussed on identifying patients’ perceived needs of health information and did not explore the effectiveness of communication, the availability of health information or the accuracy of patients’ knowledge of OA. Identifying these factors and where they deviate from patient perceived needs may improve health information delivery.

Despite these limitations, this review has provided a comprehensive summary of the existing literature from four complementary databases and incorporates both qualitative and quantitative studies to capture the breadth of the topic. By performing an inclusive scoping review, this has allowed a richer description of the patient experiences and perceived needs, spanning across all disciplines of OA health care than would have been possible otherwise. We have included all identified perceived needs, regardless of the quality of the evidence. This is necessary to capture to breadth of evidence available and to record all reported patients’ needs. However, we acknowledge that any finding in a single study requires validation in another study. Thus, while we have included all relevant literature, it is possible that some needs may not have been addressed within the existing literature, and as such, we cannot conclude that the evidence we have synthesised is exhaustive on the topic (eg the role of new digital technology in health information provision). This must be taken into consideration when accepting the conclusions.

To address whether the perceived needs of patients are a true reflection of need, a needs assessment is required. This involves a complex, iterative process of exploring patient health literacy, their perceived health information needs and an understanding of the content of health information provided and resource allocation (Fig 2). These results should also be taken in conjunction with patients’ perceived needs of health services, which are motivated by the need for symptom control and largely aligned with existing guidelines[71]. Our results suggest that there are gaps in current content and mode of delivery of OA health information. This may adversely impact the uptake of OA management guidelines and recommendations that require active patient participation, such as exercise therapy. The costs of healthcare are rising[72], yet at the same time, the available resources are limited. The results of this review will be useful to assist healthcare providers and policy-makers to better understand the perceived needs of patients, informing future management strategies and guidelines, taking into account the patient perspective. Moving forward, when implementing guidelines, healthcare providers may need to provide more individualised information to patients regarding the diagnosis and management of OA and utilise multiple modes of information delivery to provide patient-centred care and optimise patient uptake of their recommendations. Further education should also be provided to healthcare providers to equip them with the knowledge and skills required to manage patients with OA and also to enhance their communication skills to convey the appropriate messages. Moreover, patients should be involved in developing guidelines and patient information material, incorporating the patient perspective. This may improve the communication of health information to patients, using appropriate language that better aligns with their preferences and expectations[54]. There is a gap in the evidence about the effects of this partnership[73], which should be evaluated in future studies to assess whether patient involvement in developing patient information material ultimately translates into improved OA outcomes.

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Fig 2. Conceptualising health information needs assessment.

https://doi.org/10.1371/journal.pone.0195489.g002

Conclusions

We have used a broad systematic scoping review of the literature to identify patients’ health information needs relating to OA. We found that patients are dissatisfied with the delivery of health information, as well as the content provided, particularly regarding the management options, prognosis of OA and preventive strategies. This review helps to understand how patients’ needs relate to existing guidelines and where they deviate. Identifying these gaps will improve our ability to develop strategies to better align patients with evidence-based practice, promote more effective self-management and increase the uptake of recommendations from guidelines. To do this more successfully we can utilise novel information delivery strategies, using a variety of complementary sources of information. These may result in better health outcomes for patients with OA.

Supporting information

Acknowledgments

We would like to acknowledge Ms Ozden Petale for her help in ensuring that the work remained relevant to patients.