Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus

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Abstract

To assess the prevalence and correlates of perceived unmet need among people with systemic lupus erythematosus (SLE) 386 people with SLE, recruited from a support association in NSW, Australia, completed a mail-back survey that included 97 items measuring perceived unmet needs across seven domains: physical, daily living, psychological/spiritual/existential, health services, health information, social support and employment/financial.

Ninety-four percent of participants had at least one unmet need. The highest levels of unmet need were tiredness (81%); pain (73%); not being able to do things one used to (72%); fear of exacerbation (72%); sleeping problems (70%); anxiety and stress (69%); and feeling down (68%). Five of the highest levels of unmet needs were in the psychological domain. Researchers concluded that current health care delivery is not adequately meeting some of the needs of people with SLE. A comprehensive needs assessment questionnaire for all SLE patients could help providers manage protocols more effectively.

Introduction

Systemic lupus erythematosus (SLE) is an inflammatory, auto-immune disease affecting the connective tissue in various parts of the body. Incidence and prevalence rates are difficult to ascertain, but based on surveys conducted in North America, Europe and Australian Aboriginal communities, can be generally estimated to vary between 2.5 and 11 per 100,000 (incidence) and 21.7 and 122 per 100,000 (prevalence) [1], [2], [3]. Women are more likely than men to have the disorder at a ratio of 9:1 [4], while non-Caucasians have twice the incidence of SLE as Caucasians [5]. Onset occurs most often between 15 and 45 years of age [6]. Long term survival rates have improved from 50% at 5 years prior to the 1950s [7] to 85% surviving for 10 years [8]. SLE is considered to be a chronic condition with a relapsing-remitting nature and is incurable [4].

Research shows that the physical morbidity suffered by people as a result of SLE is significant. The affected person may experience a variety of symptoms such as joint pain, fever, hair loss, fatigue, breathlessness and weakness. Approximately 75% of sufferers will develop abnormalities in the structure and function of one or more vital organs such as the heart [9], kidneys [10], lungs [4] and brain [11]. People with SLE are more prone to develop vascular disease [12] and recurrent miscarriage [13]. Polyarthritis, pleuritis, pericarditis, severe headaches and skin rashes may all contribute intermittently to impede daily functioning [4]. Sun exposure is known to trigger onset and flare-ups of the disease [14]. Treatment complications such as retinal damage, osteoporosis and weight gain may occur following use of current treatment regimes [4]. Delay in diagnosis and treatment can lead to varying degrees of permanent functional impairment in affected organs due to chronic inflammatory processes [6]. People with SLE are more likely than the general population to be hospitalized (32% in 1 year) and to be unable to work (66% compared to 38% non-participation work rate in the general population) because of their illness [15]. In addition to the physical consequences of the disease, psychological and psychosocial symptoms associated with the disorder include anxiety, depression and mood disorders [14], [15], [16].

Assessment of patient psychosocial needs is an emerging and important aspect of health care quality assurance [17], [18]. While patient satisfaction surveys have focussed on perceived quality of care issues [19], needs assessment is the process of measuring patients’ perceptions of issues with which they require help to attain optimal health and quality of life outcomes. It identifies the gap between the persons’ expectations and experience [20]. Quality of life measures do not acknowledge these expectations and merely assess the persons’ perception of their current experience, thus leaving the health care provider to gauge the level of help required. Assessment of patient needs therefore provides an indication of the perceived efficacy of the health delivery system in providing required help.

To provide useful information a needs assessment should fulfill a number of methodological criteria: adequately sample the range of needs in all life areas; assess whether needs have been experienced as well as whether they have been met or remain unmet; directly assess the person’s perspectives of their needs; be user friendly; relate to a defined temporal context to avoid ambiguity and recall problems and provide information about needs relevant to care delivery [18], [21]. While some previous studies have described the psychosocial consequences of SLE, no studies have reported the needs of people with SLE using instruments that satisfy these criteria.

Limited data are however available from less rigorous studies that describe the needs of such patients for care, support and resources. A qualitative focus group analysis of SLE patient needs conducted in Australia (1997), indicated SLE patients expressed a need for more patient education regarding SLE, greater continuity of health care, and provider sensitivity to their experience of SLE [22]. In an early quantitative analysis of the unmet needs of 386 SLE patient undertaken in New South Wales, Australia, respondents indicated difficulties with depressive feelings, stress, employment and ability to cope with changed body image [15]. The authors recommended that patient education programs be developed. Although of value, this study was further limited by use of a dichotomous response for the 19 item format that failed to elicit the degree of need in each area, and comprehensive psychometric analysis of the instrument was not reported. No more recent or methodologically rigorous data have been reported that describe the needs of SLE patients.

Previous systemic lupus erythematosus health assessment studies have not assessed possible associations between levels of need and demographic and clinical variables. One earlier study found highly significant correlations between SLE related disability and poor vocational adjustment [23] and a more recent study has shown inverse associations between levels of SLE disease activity and level of education and unemployment [24]. These findings suggest that needs may vary between different groups in the patient population. However, the possibility remains untested.

Given the absence of adequate data describing the nature of met and unmet needs among SLE patients, the current study aimed to assess the prevalence and correlates of such needs.

Section snippets

Design

A cross-sectional descriptive study was undertaken to determine the level and correlates of unmet needs among people with systemic lupus erythematosus.

Setting and sample

The study surveyed selected members of the Lupus Association of New South Wales Australia, an organization which provides information, support and counseling to any person in New South Wales with SLE. The Association has an estimated membership of 1100 people, with approximately 600 having a diagnosis of SLE. Membership of the Association is

Sample

A total of 594 people were sent the questionnaire with 386 (65%) returning it completed including 30 (5%) which were returned following the reminder telephone call. Ninety-four percent of participants (n=363) who completed the questionnaire were women. Twenty-one percent of completed questionnaires were from people less than 40 years of age and 48% were from people aged between 40 and 59 years of age. The respondents mean age was 52.5 years (S.D. 14.4) while the average time between patients

Discussion

Our study has uncovered a number of issues that have important implications for the management of people with SLE. First, our study found that need for help with psychosocial and lifestyle problems outranked the needs for information. This finding differed slightly with findings from patient needs assessment in other diseases. For example Foot (1995) and Rainbird (1999) found psychological and health information needs to be predominant among cancer patients. The high prevalence for need for

Acknowledgements

The authors wish to thank Dr. Glenn Reeves—Staff Specialist, Immunology, John Hunter Hospital, Newcastle, Rachel Rossiter, Clinical Nurse Consultant from the Scleroderma/Lupus Resource Centre, Newcastle, and the staff, volunteers and members of the Lupus Association of NSW who were unfailingly generous with their time and energy towards this project.

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