Beliefs about medications: a questionnaire survey of people with rheumatoid arthritis.

OBJECTIVES: To investigate beliefs about medications held by people with rheumatoid arthritis (RA), what factors are related to these specific medication beliefs, and whether these beliefs influence adherence. METHODS: The design was a cross-sectional postal questionnaire survey of people with RA. The Beliefs about Medicines Questionnaire was used to assess beliefs about the necessity of medication and concerns about it. Questionnaires were mailed to 600 out-patients with RA. RESULTS: The response rate was 57.3%. Most (74.3%) respondents agreed or strongly agreed that their arthritis medications are necessary for their health. However, 47.4% were concerned about potential adverse consequences. The overall necessity score (mean 19.2, s.d. 3.13) was higher than the concerns score (mean 15.84, s.d. 3.53; P<0.001). Greater disability was associated with higher necessity scores (r = 0.36; P<0.001). Greater helplessness correlated with higher concerns scores (r = 0.49; P<0.001). There was no association between RA knowledge and beliefs about medications (necessity scale, r = 0.02, P = 0.66; concerns scale, r=-0.08, P = 0.14). Concerns scores for non-adherent participants (mean 17.88, s.d. 3.29) were higher than for the adherent group (mean 15.64, s.d. 3.51; P = 0.002). CONCLUSIONS: Most people with RA have positive beliefs about the necessity of their medication. However, levels of concern are high and associate with helplessness and non-adherence. The Beliefs about Medicines Questionnaire may identify people at risk of poor adherence and provide a focus for patients to discuss their beliefs, providing opportunities to improve adherence.

Genetic risk of knee osteoarthritis: a sibling study.

OBJECTIVES: To determine whether there is a genetic contribution to knee osteoarthritis (OA) as defined by structural change on plain radiographs. DESIGN: Sibling study. Comparison of knee OA prevalence in the community with knee OA prevalence among siblings of index cases with knee OA. SUBJECTS: 490 knee OA index cases listed for total knee replacement and 737 of their siblings aged >40 years, 1729 community subjects aged >40 years. MAIN OUTCOME MEASURE: Odds ratio for radiographic knee OA in siblings v community participants. RESULTS: The age, sex, and knee pain adjusted odds ratios in siblings were 2.9 (95% confidence interval 2.3 to 3.7) for tibiofemoral OA and 1.7 (1.4 to 2.2) for patellofemoral OA. This difference remained after adjustment for important environmental risk factors. The heritability estimate for knee OA was 0.62. CONCLUSIONS: Siblings are at increased risk of knee OA in comparison with the general population. This is likely to be due to genetic factors.

Relative risk of knee chondrocalcinosis in siblings of index cases with pyrophosphate arthropathy.

OBJECTIVES: To examine the genetic contribution to common, apparently sporadic, radiographic knee chondrocalcinosis (CC) and pyrophosphate arthropathy (PA). METHOD: (1). DESIGN: radiographic sibling study. Comparison of the prevalences of knee CC and PA in siblings of index cases with PA with those in the community. (2). SUBJECTS: 80 index cases with PA listed for total knee replacement; 122 of their siblings aged >or=40 years; and 1729 participants from community knee pain surveys who had undergone knee radiographs. (3). MAIN OUTCOME MEASURE: odds ratios of knee CC and PA in siblings versus community participants. RESULTS: The prevalence of knee CC was 13% (15/116) in the siblings and 6.9% (119/1727) in the community participants. The adjusted odds ratio (aOR) was 1.2, 95% confidence interval (CI) 0.6 to 2.3. The main risk factors for knee CC were age, knee pain, and knee OA. The prevalence of knee PA was 7% (9/122) in the siblings and 3.4% (59/1729) among the community participants (aOR = 1.1, 95% CI 0.4 to 2.7). The main risk factors for PA were age and knee pain. The age, sex, and knee pain standardised prevalence of PA in the Nottingham community aged >or=40 was 2.40%. CONCLUSION: The risk of knee CC and PA in siblings of index cases with PA is no higher than that in the general population. Although rare familial CC is recognised, this study suggests that no major genetic predisposition to CC occurs in common symptomatic knee OA.

UK community prevalence of knee chondrocalcinosis: evidence that correlation with osteoarthritis is through a shared association with osteophyte.

OBJECTIVES: (1) To estimate the prevalence of chondrocalcinosis (CC) in the community and to characterise its compartmental distribution within the knee. (2) To investigate the associations between CC and individual radiographic features of osteoarthritis (OA) at the tibiofemoral joint (TFJ) and patellofemoral joint (PFJ). METHODS: From three community questionnaire studies investigating the prevalence of knee pain, standing anteroposterior and skyline radiographs were obtained on 1727 subjects (1084 women, 643 men; mean age 63.7; 999 (58%) with knee pain). A single observer recorded the presence and site of CC and graded osteophyte and joint space narrowing (JSN) using a line atlas. "OA" was globally defined as the presence of definite osteophyte and definite JSN. Minimum joint space width (JSW) was measured to 0.1 mm with a metered dial caliper RESULTS: (1) The crude prevalence of CC was 7.0% (95% confidence interval (CI) 5.8 to 8.2). This showed a strong association with age. The age adjusted odds ratio (aOR) for CC in women v men was 0.79 (95% CI 0.52 to 1.12). The age, sex, and knee pain standardised estimate for those aged >40 in Nottingham, UK was 4.5%. Patellofemoral CC was seen in only nine cases, all with tibiofemoral CC. (2) The age-sex aOR for the association between CC and OA was 2.08 at the PFJ (1.38 to 3.12) and 2.00 (1.11 to 3.60) at the TFJ. There was no association between measured JSW and CC at either the PFJ or TFJ. Both total osteophyte score and total number of sites with osteophyte were positively associated with CC; aOR for the upper quartile was 2.40 (1.48 to 3.90) and 1.94 (1.15 to 3.26), respectively. An association between CC and diuretic use was also demonstrated (aOR=2.07, 1.02 to 4.19). CONCLUSIONS: In this large UK community study the age, sex, and knee pain adjusted prevalence of CC was 4.5%. There was a strong age association, but no sex predisposition. Patellofemoral CC was uncommon. An association between OA and CC was confirmed, but this appears to operate through an association with osteophyte rather than JSN. The new association between CC and diuretic use might theoretically be explained by diuretic induced hypomagnesaemia.

Creating an infrastructure for the productive sharing of clinical information.

The need for a patient-centered approach to health care services delivery is well recognized. Health care has become more specialized, with increasing numbers of disciplines and subdisciplines. In addition, both providers and community are increasingly mobile. As a consequence, patients see more providers, which has led to increasing fragmentation of patient-centered care and in particular of patients' personal health records. Clinicians and patients alike recognize the need to ensure that care information is patient-centered, continuous, and integrated in order to optimize the effectiveness of proactive and reactive care. Current arrangements, however, including the architecture of medical record and information management systems, are mainly provider- and service-centered and may not readily support the sharing of data to this end.

Communications and EHR: authenticating who's who is vital.

It is becoming increasingly essential for individuals to be able uniquely to identify themselves and each other, even where they may never meet. Access to and use of privileges of membership, whether of a professional association, computer network or health insurance policy depends upon the 'members' being able to prove that they are who they say they are, frequently from a remote location. Patients must be able both to claim their entitlements (e.g. insurance) and assemble their confidential medical records wherever they are. Providers must be able to access secured services and assert their privileges (e.g. issue prescriptions). Institutions must be able to recognise both patients and providers and accord them their due rights and privileges. To do this proof positive of who's who is essential. Individuals need to be able to identify themselves quickly and easily as 'club' members, this could be addressed by establishing sector-wide unique identifier (UI) systems, although UI systems raise specific security issues.

Medical informatics educational tasks seen from practical perspective. Tempus-Phare Project CME-02555-96.

This paper tries to synthesize the discussion of a seminar on medical informatics educational tasks held in May 1998 in Sinaia, Romania, within the frame of the Tempus-Phare Project CME-02555-96 entitled "Know How Transfer from University to Industry" and coordinated by the University of Medicine and Pharmacy Timisoara, Romania. Special emphasis was paid to particular features of medical education requirements in East European countries, with particular reference to Romania.

How can sharing clinical information be made to work?

There is a recognised need to share clinical information in order to improve integrity, continuity, safety and speed of delivering patient care. This remains a serious weakness in the conceptualisation of existing health information management systems. The evolution of structured (e.g., HL7) messaging standards has been driven largely from an administrative information viewpoint, as have many of the initiatives driving the development of electronic patient record (EPR) systems. Neither appears to address crucial needs for clinical data exchanges often across wide areas to meet the needs of best quality, cost-effective and low risk patient care delivery. The present reality is that clinical messaging is complex, rigid and ineffective, and the business case for its users is not compelling. Administrative and financial arrangements need to be developed which support the more widespread use of clinical data exchanges. This paper underlines the importance of web technology as a key element in the communications strategy and as an adjunct (or alternative) to more structured messaging environments. It also raises some of the fundamental structural problems, which impact the use of messaging in healthcare, and puts forward proposals as to how these may best be addressed and resolved.

Smart cards--the key to trustworthy health information systems.

Some 20 years after they were first developed, "smart cards" are set to play a crucial part in healthcare systems. Last year about a billion were supplied, mainly for use in the financial sector, but their special features make them of particular strategic importance for the health sector, where they offer a ready made solution to some key problems of security and confidentiality. This article outlines what smart cards are and why they are so important in managing health information. I discuss some of the unique features of smart cards that are of special importance in the development of secure and trustworthy health information systems. Smart cards would enable individuals' identities to be authenticated and communications to be secured and would provide the mechanisms for implementing strong security, differential access to data, and definitive audit trails. Patient cards can also with complete security carry personal details, data on current health problems and medications, emergency care data, and pointers to where medical records for the patient can be found. Provider cards can in addition carry authorisations and information on computer set up.

Privacy and security issues in a wide area health communications network.

In 1993 the first national health information service went live in New Zealand, using commercial network services for all communications. This system provides a point of connection for all health personnel, and for those with a legitimate interest in health care information (e.g. insurers): it also provides access to a number of information resources managed on behalf of the government of New Zealand (e.g. index of health care users), as well as to those developed by individual network service providers. Much of the data exchanged across this network is personalised. Since the recipient may not be known personally to the sender, it is vital that the sender has confidence that the recipient will treat personal information according to agreed criteria for privacy. A Code of Practice covering health information was developed under the New Zealand Privacy Act to ensure that the confidence to share confidential data was supported. For large organisations such as hospitals to function efficiently, they need the flexibility to be able quickly to assign user privileges to selected staff without the need for extra paperwork seeking approval from the centre. But the audit trail requires unique identification of the individual undertaking each transaction. This requirement has been addressed. Some of the data moved across the network relates to life-critical issues, e.g. clinical warnings about allergies or serious medical conditions. A failure of communications causing this vital information to be improperly represented in some way on the receivers system could have disastrous consequences. To ensure the integrity of data transfers, user installations have to be certified compliant with standard test scripts before they are authorized for access to these resources.

Measures implemented to project personal privacy for an on-line national patient index: a case study.

Increasing use of electronic data storage and exchange is inevitable. Although of considerable benefit to all concerned, they pose a potential threat to personal privacy. Measures to protect personal privacy in national information networks are essential. These and related security issues require the highest priority in strategic planning because experience shows that poor handling of security is the single factor most likely to lead to rejection of a system. It is increasingly important to be able to identify individuals uniquely for health-related purposes, and implementation of an on-line master index is the approach that has been adopted in New Zealand to address this need. Such an index, however, contains personal information, the privacy of which must be respected. Substituting the unique identifier for all personal details in electronic messages can provide a degree of security as long as access to the index is controlled and usage is monitored. The article outlines the measures, technical and otherwise, implemented to manage security concerns successfully in that context.

The crucial roles of standards and strategy in developing a regional health information network.

Contemporary medical practice increasingly involves the use of inter-professional teams and complex care protocols. Increasing emphasis on value for money, medical audit, quality assurance and optimal outcomes requires that the practitioner has ready access to large amounts of up-to-date information, and that various abstracts and summaries of cases are made available quickly to providers, purchaser/funders, statisticians and researchers, and others. Rapid movements of large quantities of information is vital for the future success of health care: development of health information networks are vital strategic goals. In 1991 New Zealand initiated a widespread process of health services reform, whose success depended upon better availability and faster movements of information. The first phase of a national network to support these needs was successfully implemented in mid 1993: this provided for a point of connection for all individuals and organisations involved in the health sector, using commercial networking services. Fundamental to this development has been the adoption adaptation and development of appropriate standards and specifications for interconnection profiles, communications protocols, message formats, privacy and security requirements classification and coding systems and data element definitions. These have been selected to provide the maximum utility whilst imposing the minimum of constraints on the diversity of end user systems.

Prevalence of atopic dermatitis in Leicester: a study of methodology and examination of possible ethnic variation.

A study was undertaken to investigate and compare various methods of estimating the prevalence of atopic dermatitis (AD), and to investigate a possible ethnic difference in our local community. Preschool children attending routine child health surveillance clinics and Social Services day nurseries were examined by a trained observer, and their parents were interviewed. In addition, general practice records from a health centre were scrutinized. Three hundred and twenty-two children aged 1-4 years were examined, and the point prevalence of AD was 14% [95% confidence interval (CI) 10-18]. There was no apparent ethnic difference in prevalence. Twenty-seven per cent (95% CI 22-32) of parents reported that their children had suffered from 'eczema' at some time. General practitioners' records contained a diagnosis of 'eczema' in 32% (95% CI 28-36) of 446 children aged 1-4 years. It is clear that methodology must be carefully standardized if comparisons are to be made between different studies. Accurate estimations of the prevalence of AD can probably only be obtained by examination of a population sample by a trained observer. However, the estimates obtained in this study are high, and would tend to support existing evidence that the prevalence of AD is rising.