Department of Public Health and Epidemiology and 1 Department of Rheumatology, University of Birmingham, 2 University Hospital Birmingham NHS Trust, Selly Oak, Birmingham, 3 City Hospital NHS Trust, Birmingham and 4 Dudley Group of Hospitals, Dudley, West Midlands, UK.
Correspondence to: E. Rankin, Rheumatology, University Hospital Birmingham NHS Trust, Selly Oak, Birmingham B29 6JD, UK. E-mail: elizabeth.rankin{at}uhb.nhs.uk
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Abstract |
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Methods. Rheumatology patients (n = 201 responders/309 contacted) and health professionals (n = 232/430) were asked to complete a questionnaire to assess both current rheumatology service provision and perceived needs for further information that could be offered within the proposed resource centre. Views of patients and professionals were compared using odds ratios. Logistic regression analysis determined patient characteristics associated with perceived usefulness of various information types.
Results. The overall response rate was 58%. Most patients were currently receiving medication but only 38% received written information on arthritis. Over 80% of responders felt that more information would be useful, particularly information in written leaflets. Compared with professionals, patients gave higher value to certain types of medical, non-medical, support and skills information, particularly individual information from trained volunteers, and specific information on benefits, diet and alternative therapy, and symptom management. Non-Caucasian patients gave higher value to the provision of material in different languages and the availability of multilingual volunteer staff.
Conclusion. Rheumatology patients and professionals identified a relative lack of information for patients. There was wide interest in the provision of more information, with value placed on the provision of material in different languages, at an educational resource centre. This work has been used to develop the facilities currently offered at the Birmingham Arthritis Resource Centre. Further research is needed to investigate the effectiveness of the provision of good quality information to patients with arthritis.
KEY WORDS: Arthritis, Needs assessment, Patient information, Resource centre
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Introduction |
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In order to address this issue in Birmingham, we decided to set up a community-based arthritis resource centre to provide information to people with arthritis and their carers outside the usual confines of the National Health Service. The idea was modelled on a similar centre in Australia [15], though, as far as we know, that centre has not been evaluated. We carried out a needs assessment in order to inform service provision. The intention was to use a formal assessment process to assess the views of interested parties regarding such a service. Health needs assessment may be used as an evidence-based approach to plan health services that will be beneficial to the health of the population, within resource limitation [16, 17]. We describe a needs assessment using a corporate approach, which involves the systematic collection of the knowledge and views of local health professionals and users of health services on health-care services and needs [17]. The aim was to assess the current provision of arthritis services; to discover views on perceived usefulness of potential types of information that the proposed arthritis resource centre could provide; and then to examine the preferences of patients with arthritis compared with professionals working with people with arthritis. In addition, we examined variation among patients in their stated preferences for the types of information to be provided.
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Methods |
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Development of the study instrument and outcome measures
In order to prepare the questionnaire, semistructured interviews had been held with 19 key stakeholders, such as community leaders, GPs and arthritis support group members. The interviews covered themes related to current information resources, perceived gaps in provision, and the perceived usefulness of various resources that a multicultural arthritis information centre might offer. Key categories and concepts from the interviews and types of effective interventions identified from the literature review were used to develop the questionnaire. This was piloted among 50 patients and professionals to finalize the questionnaire.
In the questionnaire we asked participants to rate their perceived usefulness of a range of information types (support information, non-medical health information, skills information and medical information) potentially needed within the resource centre. A range of information types identified through our review of the literature was categorized in this way by consensus among the researchers (Table 1). There was a point scale of 14, 1 being not at all useful and 4 being very useful. Participants were also asked about perceived usefulness of a range of services (e.g. information through leaflets, audiotapes, videos and computers or via trained volunteers). They were encouraged to suggest other information that the centre could usefully provide, using an open-ended question. The questionnaire to GPs and patients also enquired about current service provision.
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Data analysis
All data were entered and analysed using the Statistical Package for the Social Sciences (SPSS) statistical software, version 9. Descriptive analysis was used to describe the range of services currently provided, and also the perceived usefulness of various facilities that the resource centre could offer. We described the proportion of patients and professionals who rated each service and information type as very useful (rating of 4 on the scale). Views of these two groups of stakeholders were compared using odds ratios (OR) and 95% confidence intervals (CI) for patients perceiving a particular item as very useful compared with professionals.
The range of information types was divided into four groups (Table 1). The perceived usefulness scale was also dichotomized, combining ratings 1 and 2 as not useful and 3 and 4 as useful. Logistic regression analysis (using the enter method) was then used to examine whether patient characteristics were related to the type of information that was perceived to be useful. Each of the four groups of information type was used in turn in the logistic regression models. Patient characteristics included in the model were age, sex, level of education, ethnicity, level of arthritis pain, level of self-care and type of arthritis.
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Results |
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Current services and information sources
The types of service patients reported as having received were predominantly medical, with 76% receiving medication. Just under half (49%) recalled having received verbal information on arthritis and their condition, and 38% stated they had been given written information (data not shown).
Within primary care, most GPs provide access to a range of services that are useful for people with arthritis; however, relatively few can do this within the practice setting. Forty-eight per cent provide written information and 25% provide alternative therapies.
Perceived usefulness of different types of information and range of services
Taking all respondents combined, there was interest in all types of information that the resource centre could offer. Over 80% felt that all the information specified would be useful. However, generally more responders perceived support-type and skills-type information as useful compared with medical or lifestyle information. In terms of how information was provided, the most popular methods were through written leaflets and trained volunteers, followed by videos and audiotapes. Participants were least keen on computerized information. There were few additional suggestions to the open-ended questions, despite the offered scope for free text.
The majority (>80%) of both patients and professionals rated most potential resources as useful (rating of 3 or 4). However, a rating of very useful (4) was more discriminating. Perceived usefulness ranged from a low of 30% of professionals giving this rating for information on rare rheumatological conditions, to a high of 79% of patients wanting to know about the side-effects of medication (Table 2).
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Perceived usefulness of resources according to patient characteristics
We examined patients responses in more detail. In general, older patients, men and those with a higher level of education were less likely to rate any information type as useful. Using logistic regression models with all patient characteristics included, younger patients and those with lower self-care scores were significantly more likely to favour support information (Table 3). Women were significantly more likely to favour non-medical health information, and those with less education and more arthritis pain were significantly more likely to prefer skills-related information. There were no particular characteristics associated with the perceived usefulness of medical information.
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Discussion |
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The aim of needs assessment is to gather the information required to bring about change beneficial to the health of the population, particularly in the context of scarce resources [17]. This approach allows us to decide on interventions that will be of benefit to the population (needs) rather than focusing on what people ask (demands). A needs assessment includes a description of current services, identification of potentially beneficial interventions, and identifying gaps in provision that health services could meet. There are different approaches to assessing health-care needs. The corporate approach used here involves eliciting the views of key stakeholders and is the most appropriate method for ensuring that provision is sensitive to the local situation [17]. The range of information types and facilities we enquired about were those shown or suggested to be of benefit to people with arthritis, and we sought the views of stakeholders in prioritizing provision. Unlike a survey of demands of stakeholders, corporate needs assessment is not bound by majority views for decision-making, but rather allows us to consider equity and effectiveness. For example, although the majority of participants here did not perceive the availability of information in other languages to be important, those from minority ethnic groups did identify this as a priority. Furthermore, whilst many patients wanted information on diet and alternative therapies, lack of good evidence on the effectiveness of such interventions will inevitably limit the availability of such information at the centre. However, where interventions are effective and there are no issues around equity or costs, the views of stakeholders are an important consideration in prioritizing services.
Questionnaire responses showed that current service provision tends to medicalize the treatment of patients with arthritis. Between a third and a half of the responders recalled receiving information, whereas three-quarters of the patients received medication. It is likely that responder GPs were those with an interest in rheumatology, and therefore current service provision may have been overestimated. Nevertheless, provision of information was perceived as of major importance and a gap in service provision.
While there was some agreement between patients and professionals about the relative usefulness of different types of information, there were also some important differences. For example, there was a similar level of interest in the provision of information on the benefits of exercise. However, patients were significantly keener to have access to information on common side-effects of medication, rare rheumatological diseases, diet and alternative therapy. The finding that not many patients rate self-management skills as very useful is of concern, given that self-management is an effective intervention [6]. This idea merits further exploration: information alone may not make a difference to health-care outcomes. Interestingly, patients gave a significantly higher rating to the provision of almost all categories of information compared with professionals. Men were less likely than women to rate as important information on diet, alternative therapy and exercise. People from non-white ethnic groups rated as important material in different languages and volunteers able to speak those languages.
The categories of information types (Tables 1 and 3) used in our study were derived through consensus among researchers following review of the literature. The categories are therefore arbitrary and may differ from groupings selected by other researchers.
There is potential for non-responder bias in the results from patients and professionals. Responders included patients (new and follow-up) and members of the multidisciplinary team. Although other studies have found ethnic minority populations to be under-represented in hospital outpatient clinics [19], it is interesting that the patient population studied here included 19% from ethnic minorities. Birmingham has approximately 22% of the population from ethnic minorities. Unfortunately, we had neither interpreters nor resources to translate the questionnaire into other languages for patients who could not read English. An important limitation of this study is that it excluded patients from ethnic minorities who could not read English.
The limited response rate could mean that we have overestimated the level of interest in information provision and its perceived usefulness. However, we obtained a range of views. Patients and professionals were prompted to consider various types of information. This could have limited the scope for respondents to come up with other unmet needs. However, the questions were derived from the initial qualitative study plus a review of the literature, so should have covered most relevant aspects. It could be argued that such a comprehensive questionnaire leads to positive replies because responders are unlikely to say no to the provision of more information. This argument is to some extent reflected in the results, but nevertheless responders expressed priorities in information and service provision. Thus, this is not simply a rheumatologist's wish-list but represents the priorities of a wider range of stakeholders. Recently, there has been a greater emphasis on the involvement of patients in the planning of health services and greater debate on priority setting [20, 21]. When this is done, there is a demand for high-quality information, as this needs assessment shows.
Neville et al. [10] developed a questionnaire in which they asked the perceived needs of rheumatology clinic patients (hospital and private practice) in Canada. Their questionnaire was developed with the help of patients, professionals and a review of the literature. Patients were grouped according to diagnosis. Over 90% of respondents were interested in learning about their disease and its treatment, and there was least interest in self-management courses and self-help groups. Similarly, our responders (patients and professionals) rated information on almost all aspects of arthritis and care above information on self-management. Like ours, their respondents preferred information in written format.
Comparisons of the preferences of physicians and arthritis patients have shown that patients rank continuity of care more highly than do physicians, and that there is a desire for more information, particularly on diet and exercise [22, 23]. However, these studies did not include primary care physicians or other members of the multidisciplinary team, and they referred to the hospital setting.
The Birmingham Arthritis Resource Centre (BARC), which has been set up on the basis of these findings, aims to provide high-quality information in an appropriate form to people (patients and carers) in their own language. The resource centre aims to complement standard medical care for people with arthritis, providing information at a convenient city-centre location, with long opening hours and minimal waiting without an appointment. We hope to encourage self-care and to help people to identify whether they should consult a doctor. Our aims are similar to the NHS walk-in centres that have been established in England. Interestingly, the number of people attending these centres is increasing and includes a higher proportion of younger adults than typically consult their GP [24]. In one area, the introduction of an NHS walk-in centre did not affect the workload of local GPs, though continuing assessment will be needed to assess the impact on local NHS providers [25, 26].
Information must be comprehensive and relevant, and presented in a format that is acceptable and useful. A key part of the development of such resources is the involvement of patients and clinicians. An attempt to collect and disseminate such resources from one centre to a wider audience has been tried in Australia [15]. However, that centre has not been evaluated and it is unknown whether the needs of people with arthritis were met.
The needs assessment described here has guided prioritization of the range and type of information that BARC is planning to provide. BARC was opened in April 2001 and provides a range of information predominantly in written format. Multilingual volunteer staff provide clients with information.
The aims of BARC are directly in line with a recent government initiative Tackling Health InequalitiesA Programme for Action [27]. We are attempting to address the inequalities in Birmingham, particularly between different ethnic communities. Our centre must have ongoing evaluation of its impact. This research is being undertaken in association with health psychologists and educationalists. Thus, the future development of BARC will be based on assessment of its effectiveness in an iterative process which should promote client satisfaction.
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Acknowledgments |
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The authors have declared no conflicts of interest.
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References |
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