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Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus
Patient Education and Counseling 57 (2005) 30–38
Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus Neta Moses a,∗ , John Wiggers a , Craig Nicholas b , Jill Cockburn a a
School of Medical Practice and Population Health, University of Newcastle, Wallsend 2287, NSW, Australia b Hunter Centre for Health Advancement, Wallsend, Newcastle, NSW, Australia Received 27 May 2003; received in revised form 19 February 2004; accepted 1 March 2004
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. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Systemic lupus erythematosus; Needs assessment
1. 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) [1–3]. 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,
∗ Corresponding author. Tel.: +61-249246370; fax: +61-249246208. E-mail address: [email protected] (N. Moses).
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 [14–16]. Assessment of patient psychosocial needs is an emerging and important aspect of health care quality assurance
0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.03.015
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
[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.
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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.
2. Method 2.1. Design A cross-sectional descriptive study was undertaken to determine the level and correlates of unmet needs among people with systemic lupus erythematosus. 2.2. 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 generated by doctor referral, hospital outpatient recommendation or self-referral. Based on information given on the annual membership form, members of the Association over 18 years of age, listed as having a diagnosis of SLE and having the ability to comprehend and complete the study procedures were eligible to participate in the study. 2.3. Procedures An information letter and a needs questionnaire were sent to each eligible person by the Lupus Association of New South Wales. Each person was asked to complete the questionnaire and return by reply-paid envelope within 10 days. If the questionnaire had not been returned after 3 weeks, the Association made a reminder telephone call. A test–retest procedure was also utilized 1 week after completion of the first questionnaire, with an identical questionnaire being mailed to those participants who indicated their willingness to complete the SLENQ a second time. 2.4. Measures The Systemic Lupus Erythematosus Needs Questionnaire (SLENQ) was developed, based on the results of a literature review of psycho-social issues associated with having SLE [14,15,21,23], previously validated cancer needs measures [18,25], key informant interviews with SLE patients, four focus groups with SLE patients and pilot testing a draft questionnaire with a convenience sample of 60 people with SLE. The pilot testing showed that 100% of respondents found the questionnaire to be acceptable and appropriate.
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2.5. Needs The questionnaire included 97 items, each of which required the respondent to indicate the extent and magnitude of their need for support or care in the previous 6 months for a particular issue using a five-point scale (1 = no need, 2 = need already satisfied, 3 = low need, 4 = moderate need and 5 = high need). 2.6. Correlates Potential correlates included in the questionnaire were current employment status, sex, age, marital status, levels of primary and tertiary education, rural/urban area of residence, close relatives with SLE or SLE like symptoms, country of birth and parents ethnicity. Apart from age which was measured as a continuous variable, all other correlates were measured as categorical variables. 2.7. Statistical analysis Construct validity of the SLENQ was undertaken by Principal Components Analysis with eigenvalues greater than 1 being considered sufficient to be retained as a factor [26]. Cronbach’s coefficient alpha statistic was used to assess the internal reliability of the questionnaire, with alpha coefficients >0.7 being accepted as the standard for adequacy of domains [27]. Cohen’s unweighted kappa was calculated to assess the significance of intercorrelation between time one and retest. 2.8. Needs The prevalence of respondents unmet needs and their demographic characteristics were summarized as proportions and presented as percentages. For these analyses, response categories were combined into two levels of unmet need—‘some’—(responses 3–5); and ‘moderate/ high’—(responses 4 and 5). 2.9. Correlates In order to separate low level of need from higher level needs the outcome variable ‘level of need’ for each of the seven domains was defined as follows: 1. No or low level of unmet needs: having answered all questions in the domain with response options 1, 2 or 3. 2. Higher level of unmet needs: having answered at least one question in the domain with response option 4 or 5. Seven backward stepwise logistic regressions were conducted to identify correlates of level of unmet needs for each domain while controlling for other variables. Correlates and outcome measures with a probability value of P < 0.25 in chi-squared univariate analyses were entered into these mul-
tivariate models. When evidence of confounding was found, the variables were retained in the model even though they were non-significant at the 0.05 level.
3. Results 3.1. 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 first symptoms and subsequent clinical diagnosis was 6.1 years (S.D. 9.5). Eighteen percent (n = 69) had children aged 0–17 with 11.4% (n = 44) of these having children aged 0–11. Fifty-five percent of participants had attended 4 years or less of high school while 35% had trade and technical qualifications and 34% had graduate degrees. Twenty-nine percent (n = 109) were from rural/remote districts and 71% (n = 268) resided in urban areas. Fifty-two (14%) respondents were from a non-English speaking background and 4 (1%) were of Aboriginal and/or Torres Strait Islander origin. All participants reported being diagnosed with having SLE and the average time since diagnosis was 10.7 years (S.D. 7.4). Comparison with age and gender characteristics of all Association members revealed no differences between respondents and non-respondents. Two hundred and fifty-eight (67%) respondents reported experiencing three or more symptoms such as joint ache, skin rash, fatigue, mouth ulcers, muscle pain, hair loss and weight loss at the time of completing the survey. Only 22 (6%) reported being symptom free at that time although 81% reported taking one or more currently recognized medications for treatment of SLE such as hydroxychloroquine, corticosteroids, azathioprine, methotrexate and various anti-inflammatory drugs. 3.2. Validity and reliability The principal components analysis identified seven factors with eigenvalues greater than 1, which together accounted for more than 53% of the total variance. The seven factors are listed in Table 1 and addressed 85 of the 97 items, with the remaining 12 items failing to load on to any factor (see Table 3). Internal reliability co-efficients (Cronbach alpha) of all seven factors exceeded the minimum alpha co-efficient (0.7) and ranged from 0.77 to 0.96. Kappa values for the test-retest procedure ranged from 0.32 to 0.70 with 85 of 97 items (88%) exceeding 0.4, indicating at least moderate or substantial levels of agreement [28]. A fair level of agree-
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
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Table 1 Significant correlates in the seven domains Variable
Estimate
S.E.
Odds ratio (95% CI)
Significant correlates of reporting ‘some need’ in the physical domain Current marital status Defacto −0.819 0.510 0.44 (0.16–1.20) Divorced 0.802 0.554 2.23 (0.75–6.61) Single 1.625 0.641 5.08 (1.44–17.88) Widowed −0.485 0.515 0.62 (0.22–1.69) Married Age
0.03
1.03 (1.01–1.05)
Significant correlates of reporting ‘some need’ in the daily living domain Current work Disability/sickness 1.475 0.40 4.37 Household duties 0.577 0.37 1.78 Part time/casual 0.521 0.34 1.68 Retired/pension 0.226 0.45 1.25 Full time Level of school education <4 years high school Four years high school Five years high school Six years high school Age
−0.536 −0.429 −1.390
0.33 0.31 0.48
1.71 (0.89–3.26) 1.53 (0.84–2.82) 4.01 (1.57–10.29)
0.03
0.012
1.03 (1.01–1.05)
0.64
0.32
1.90 (1.02–3.56)
Significant correlates of reporting ‘some need’ in the health services domain Country of birth Australia 0.775 0.28 2.17 (1.25–3.75) Overseas Significant correlates of reporting ‘some need’ in the health information domain Current work Disability/sickness 0.852 0.38 2.35 (1.10–4.99) Household duties 0.434 0.35 1.54 (0.77–3.09) Part time/casual 0.572 0.33 1.77 (0.93–3.37) Retired/pension −0.148 0.43 0.86 (0.37–2.01) Full time Age
−0.009
0.01
Significant correlates of reporting ‘some need’ in the social domain Age −0.022 0.01
0.99 (0.97–1.01) 0.98 (0.96–0.99)
Significant correlates of reporting ‘some need’ in the employment/financial domain Current work Disability/sickness 2.068 0.41 7.91 (3.54–17.68) Household duties 0.416 0.38 1.52 (0.71–3.22) Part time/casual 0.684 0.34 1.98 (1.01–3.90) Retired/pension −0.012 0.51 0.99 (0.36–2.70) Full time Age
−0.025
0.01
S.E.: standard error, CI: confidence interval, d.f.: degrees of freedom.
d.f.
P-value
12.879
4
0.011
7.438
1
0.006
15.890
4
0.003
8.662
3
0.341
4.499
1
0.034
6.658
1
0.009
4.063
1
0.043
7.727
1
0.005
9.687
4
0.046
0.657
1
0.4176
9.541
1
0.002
33.976
4
(2.01–9.52) (0.87–3.66) (0.86–3.29) (0.52–3.04)
Significant correlates of reporting ‘some need’ in the psychological spiritual/existential domain Location Rural −0.63 0.25 0.53 (0.33–0.86) Urban Non-English speaking background No Yes
X2
0.98 (0.95–0.99)
0.001 0.047
4.637
1
0.031
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N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
Table 2 Proportion of participants with at least one need per domain rated 3–5 (some need) and 4, 5 (moderate/high need) (N = 386) Domain
Physical Daily Psychological/spiritual/existential Health services Health information Social support Employment/financial
Some need
Moderate/high need
%
95% CI
%
95% CI
94.3 71.5 90.9 79.8 77.5 78.5 54.1
91.98–96.62 66.47–75.53 87.80–93.60 75.79–83.81 73.33–81.67 74.40–82.60 49.12–59.08
84.0 46.4 71.0 60.1 58.0 54.7 36.0
80.34–87.66 41.42–51.38 66.47–75.53 55.21–64.99 53.07–62.93 49.73–59.67 31.21–40.79
ment (K = 0.2–0.4) was found for the remaining 12 items (12%). 3.3. Prevalence of perceived unmet needs A wide variation in prevalence of unmet needs was evident across all 97 items with childminding facilities at the hospital or clinic having the lowest prevalence of some unmet need at 4% and need for help with tiredness having the highest prevalence at 81%. Eighty-eight percent of items had at least a 25% prevalence of some unmet need and 45% of items had at least 25% prevalence of moderate to high unmet need. Ninety-four percent of participants reported having at least one unmet need, and 83% had at least one moderate/high need (Table 2). The 10 items with the highest prevalence of some and moderate-to-high unmet need are shown in Table 3. Of these 10 items, 5 were related to the psychological needs domain and 3 items were related to the physical domain. The prevalence of some need for each of the top ten items was 63% or greater, and the prevalence of moderate-to-high need was 35% or greater. 3.4. Physical domain The proportion of respondents reporting some unmet need for issues addressed by physical symptoms varied from 33% for maintaining dental health to 81% for tiredness (Table 3). All 13 items had at least 25% of some unmet physical need and 69% of items had at least 25% of respondents reporting moderate/high unmet need. Eighty-one percent of participants had an unmet need for help with tiredness, with 54% reporting a moderate/high level of such need. Unmet needs arising from pain, sleeping problems and headaches were reported by between 59 and 73% of respondents, with between 32 and 53% indicating a moderate/high level of unmet need with these issues. Logistic regression analysis revealed that participants who were single had five times the odds of having higher unmet needs in the physical domain than those who were married (OR = 5.08, CI = (1.44, 17.88)), while the odds of having higher unmet needs increased with increasing age (OR = 1.03, CI = (1.01, 1.05)).
3.5. Daily living issues The proportion of respondents reporting some unmet needs for daily living issues varied from 17% for reading difficulties to 61% for help with work around the home. Fifty percent of the eight items had at least 25% prevalence of some unmet daily living need but only one item had >25% prevalence of moderate/high unmet need (Table 3). Sixty-one percent of participants had an unmet need for help with working around the home with 33% reporting a moderate/high level of such need. Thirty-seven percent reported some need for help with food preparation (15% moderate/high need) and 41% had some need for help with shopping (23% moderate/high need). Those participants on disability or sickness benefits had over four times the odds of having higher unmet need in the daily living domain than those who worked full-time (OR = 4.37, CI = (2.00, 9.52)), while the odds of having higher unmet needs increased with increasing age (OR = 1.02, CI = (1.00, 1.05)). Participants who had completed 6 years of high school had four times the odds of having higher unmet need in the daily living domain than those who had completed 5 years of high school (OR = 4.01, CI = (1.58, 10.22)). 3.6. Psychological/spiritual/existential The proportion of respondents reporting some unmet needs for help with psychological/spiritual/existential issues varied from 20% for a need for help with clarifying spiritual beliefs to 72% for a need for strategies to help deal with fears of disease exacerbation and for coping with the frustration of not being able to do what they used to do. All but one of the 20 items had at least 25% prevalence of some unmet psychological/spiritual/existential need, and 65% of items had at least 25% of moderate/high unmet need (Table 3). A need for support for issues arising from the inability to undertake previous activities was expressed by 72% of respondents, with 50% having a moderate to high level of need. Sixty-nine percent reported unmet needs in dealing with anxiety and stress and 68% required assistance with
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38 Table 3 Ten or less most prevalent unmet needs per domain (N = 386) Item
Some need (%)
Moderate/ high need (%)
Physical Tirednessa Paina Sleeping problemsa Headaches Skin rashes Dry mouth Shortness of breath Mouth ulcers Urinary frequency Dental health
81 73 70 59 51 47 46 41 37 33
54 53 40 32 29 24 25 19 23 18
Daily living issues Work around home Shopping Food preparation Driving difficulty Writing problems Transport to appointments Speaking problems Reading difficulties
61 41 37 26 23 21 16 17
33 23 15 14 11 11 6 8
Psychological/spiritual/existential Unable to do what useda Fears disease flarea Anxiety and stressa Feeling down/depresseda Fears physical disabilitya Uncertainty re future Changes in appearance Keeping positive outlook Feeling in control Feeling useless
72 72 69 68 65 57 54 54 51 50
50 42 42 42 41 35 29 29 27 26
Health services Reassurance re normality Open discussion with doctors Knowing when to see doctor Talking to one professional Rapid test result information Concerns to be taken seriously Information re treatment effects Discussion time with doctors GP not understanding SLE Selecting medical help
47 44 44 41 41 41 41 38 38 35
26 31 26 29 28 25 23 22 23 25
Health information Information reservices and benefits Guidance on disease phase activity Obtaining self-help information Support for complementary therapy Relaxation classes Dietary information Getting written information Obtaining current information Drop in counseling Counseling services
48 47 45 44 42 41 40 39 39 36
31 27 27 25 23 22 24 24 22 16
Social support Explaining SLE unpredictabilitya Others coping with SLE Ability to participate in social activity Expressing feeling with others
64 53 51 48
41 31 29 28
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Table 3 (Continued ) Item
Some need (%)
Moderate/ high need (%)
46 36 35 33 33 24
23 24 18 19 19 14
Employment Meeting extra costs of disease Meeting living expenses Maintaining job performance Gaining employment
39 31 29 13
24 19 18 9
12 items without primary loading Concerns re other health problemsa Coping with the cold Opportunity to talk with someone similar Digestive problems Difficulty thinking clearly Co-workers understanding SLE Easy car parking at hospital Nausea and/or vomiting Information on mobility parking Inf. on implementing changes to home Pregnancy information with SLE Child-minding at the hospital or clinic
63 54 53 50 45 32 30 26 22 21 8 4
35 32 29 29 18 19 21 12 13 13 6 3
Coping with attitude changes to self Support from partner/children Maintaining friendships Maintaining family relationships Coping with change in sexual relations Sexual information for partner
a
Among the 10 highest unmet needs reported in the last 6 months.
depression. Seventy-two percent had some need for help in dealing with the fear that the disease would worsen and 65% were concerned about potential physical disability. Slightly less than half of all respondents reported a moderate/high level of unmet need for help with the latter two issues. Participants from an English speaking background had nearly twice the odds of having higher unmet needs in this domain than those who were from a non-English speaking background (OR = 1.90, CI = (1.02, 3.56)). Participants from urban areas had greater odds of having higher unmet need than those from rural regions (OR = 1.89, CI = (1.16, 3.08)). 3.7. Health services The proportion of respondents reporting some unmet need for health services varied from 17% for privacy rights to 47% for the need to be reassured by doctors regarding the normalcy of feelings. Ninety-three percent of the 15 items had at least 25% prevalence of some unmet health service need and 47% of items had at least 25% prevalence of moderate/high unmet need (Table 3). Forty-seven percent of participants had an unmet need for help with being reassured by their doctors that their feelings are normal, with 26% reporting a moderate/high level of need. Forty-four percent of respondents reported some need for help with both knowing when to see their doctor and being able to have an open discussion with the
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doctor with 26 and 31% expressing moderate/high levels of need, respectively. Participants who were born overseas were twice as likely to have some unmet need for help with health services than those born in Australia (OR = 2.17, CI = (1.25, 3.75)). 3.8. Health information The proportion of respondents reporting some unmet needs for health information varied from 27% for the need for information on support groups to 48% for the need for information about services and benefits. All of the 13 items had at least 25% prevalence of some unmet health information need, and 31% of items had at least 25% of moderate/high unmet needs (Table 3). Forty-eight percent of participants reported an unmet need for help in obtaining information on services and benefits with 31% expressing a moderate to high need for help with addressing this issue. Forty-seven percent of participants expressed the need for guidance on activities during the different phases of the disease (27% moderate/high), while 45% needed help in obtaining self-help information (27% moderate/high). Those participants on disability or sickness benefits had over twice the odds of having higher unmet need for health information compared to those in full-time employment (OR = 2.345, CI = (1.10, 4.99)). 3.9. Social support The proportion of respondents reporting some unmet needs concerning social support varied from 24% for sexual information for partner, to 53% for others coping with SLE. All 10 items had at least 5% prevalence of some unmet social support need, and 40% of items had at least 25% of moderate/high unmet needs (Table 3). Sixty-four percent of respondents had some (41% moderate/high) need for help in explaining their circumstances to the people around them. Fifty-three percent (31% moderate/high) required help in assisting others to cope with their situation. Over half (51%) expressed difficulty in participating in social activities, while 48% had some need for help in expressing their feelings to other people. The odds of having higher unmet needs in the social domain decreased as age increased (OR = 0.98, CI = (0.96–0.99)). 3.10. Employment/financial The proportion of respondents reporting some unmet needs in the employment/financial arena varied from 13% for gaining employment to 39% for unmet needs in meeting the extra costs of disease. Three of the four items had at least 25% prevalence of some unmet employment/financial needs, however none of the items had at least 25% moderate/high need (Table 3).
Thirty-nine percent of respondents had some need for help in meeting the extra costs of the disease (24% moderate/high need) while 31% needed help with meeting living expenses (19% moderate/high need). Twenty-nine percent expressed some need for help in maintaining job performance with 18% having high/moderate need. The odds of having higher unmet need in the employment/financial domain were nearly eight times greater for those on disability or sickness benefits than those who worked full-time (OR = 7.91, CI = (3.54, 17.67)) while those who worked part-time or casual had nearly twice the odds of having higher unmet needs (OR = 1.98, CI = (1.01, 3.90)). The odds of having higher unmet need in the employment/financial domain decreased as age increased (OR = 0.98, CI = (0.95, 0.99)).
4. 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 help with psychosocial issues is supported by other studies and may be affiliated in part with the flare-remission nature of SLE and the wide range of disease manifestations. A recent survey of SLE hospital out-patients in England also reported that 81% of respondents suffered from fatigue [29], and the level of need for help with depression in our study is the same as that in the earlier Australian survey [15]. The lack of change in levels of unmet need for psycho-social issues between this earlier study and the current one is a cause for concern. Second, the current study has highlighted the association between employment and SLE. There were more older participants in the present study (57% over the age of 50) compared with the earlier study by Bauman et al. (40%), which may be reflective of the improving long term survival rate. Despite this, the current study identified 41% of respondents in full-time or part-time work compared to one-third of participants in the previous study. This slightly higher employment rate suggests that the employment capacity among people with SLE may have increased since the earlier study. However, as these rates are markedly lower than the employment rates for this age group in the general population (62%), and 52% of respondents indicated that SLE affected their ability to work, it appears that SLE retains a significant negative effect on this important element of normal functioning. Participants who worked full-time reported significantly less need in the daily living, health information and employment/financial domains than those on disability or sickness benefits. This may reflect the degree of disease
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
severity and/or treatment efficacy of those respondents who are able to participate more fully in the workplace. Third, in overall terms the very high prevalence of unmet needs in this study demonstrate a substantial gap in the capacity of health care and other services to meet the range of non-hospital based care needs of patients, particularly those relating to psycho-social, psychological and self-help management requirements. The prevalence of unmet need identified in this study is greater than the prevalence of unmet needs in studies from other patient groups. For example Foot (1995) and Rainbird (1999) found lower levels of anxiety, depression and fatigue in patients with cancer. Despite the older age of this cohort relative to that reported by Bauman et al. (1989) only 20% reported having been hospitalized for their SLE in the previous year. This lower incidence compared to a figure of 32% reported by Bauman et al. may be a result of improved management strategies, an improvement that is reflected in the reduction in mortality and morbidity rates in SLE [8,2]. However, the number of reported annual hospital separations in the SLE study group (160) continues to exceed the expected general population rate [30]. There are some limitations to the present study that should be kept in mind when interpreting the results. First, given that we used a convenience sample of people with SLE, the generalisability of the results to the total (albeit unknown) population of SLE sufferers is not known. Assuming a prevalence of SLE in the community between 21.7 and 122 per 100,000 [1–3] the current study’s sample of 386 drawn from a state adult population of 5 million could represent between 6 and 36% of those with SLE in New South Wales. The demographic and clinical characteristics of the study sample obtained in this study is similar to those obtained in previous studies [15,21]. However, a self-selection bias is inherent in drawing a sample from a support organization, as members of a support organization may have either higher level of needs, or may be more active and successful help seekers, resulting in lower levels of reported need. Second, the consent rate of 65%, although consistent with the results of similar needs assessment surveys among people with other illnesses [31] necessitates caution when interpreting the study results. Apart from age and sex, no demographic or clinical data were obtained from non-consenters and it is not possible to ascertain whether any differences existed in these parameters between those who responded to the survey and those who did not. In order to address the study limitations of generalisability and possible age bias, a need exists for further research of patients drawn from other settings where the risk of self selection bias can be minimized.
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important that health care providers are aware of the extent and nature of needs experienced by their patients. Utilizing a comprehensive needs assessment questionnaire for all newly diagnosed SLE patients and regularly for existing SLE sufferers could help carers to achieve this. Particularly needy groups appear to be older patients and those who are not employed. Second, having identified a patients unmet needs, practitioners need to respond by providing information, referral and appropriate interventions that address those needs. Practitioners may also need to consider modification of their treatment protocols to minimize, where possible, the negative consequences of treatment for patients. Previous studies have demonstrated that interventions directed at reducing functional disability and increasing social support both lower psychological distress in SLE patients and enhance clinical outcomes [32–34]. The present study suggests a basis for targeting such protocols to those patients who are on disability or sickness benefits, the elderly and those who are single. Although the results of this study suggest a clear need for practitioners to respond to the unmet needs of their patients, very limited evidence exists regarding interventions that are efficacious in addressing these needs. The results of this study therefore suggest a clear need for the development and testing of such interventions. Very limited research has been undertaken in this area. Similarly, a need exists for longitudinal studies to provide a greater understanding of the temporal, social and clinical factors associated with the level and nature of patient needs. Finally, support services for people with SLE in Australia are primarily supplied by the non-profit associations and by education programs conducted at selective major hospitals, usually through rheumatology or immunology departments. This level of service has remained largely unchanged over the past decade. The high level of unmet need demonstrated by this study demonstrates an opportunity for such organizations and services to review the nature of their service provision to ensure that what is provided is appropriate to the needs of their members, is based upon evidence of effectiveness, and is appropriately targeted. 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.
4.1. Practice implications The primary indication for practice from these findings is the urgent requirement for practitioners to respond to the high levels of unmet needs experienced by their patients. Such a response should take at least two forms. First, it is
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[2] Uramoto KM, Michet Jr CJ, Thumboo J, Sunku J, O’Fallon WM, Gabriel SE. Trends in the incidence and mortality of systemic lupus erythematosus. Arthritis Rheum 1999;42:46–50. [3] Anstey NM, Bastian I, Dunckley H, Currie BJ. Systemic lupus erythematosus in Australian Aborigines: high prevalence, morbidity and mortality. Aust NZ J Med 1993;23:646–51. [4] Lash A. Systemic lupus erythematosus Part 2. Derm Nurs 1994;6:167–77. [5] Hopkinson N, Doherty M, Powell RJ. Clinical features and race specific incidence/prevalence rates of systemic lupus erythematosus in a geographically complete cohort of patients. Ann Rheum Dis 1994;53:675–80. [6] Wallace D. The lupus book. New York: Oxford University Press; 1995. [7] Merrell M, Shulman LE. Determination of prognosis in chronic disease, illustrated by systemic lupus erythematosus. J Chron Dis 1955;1:12–32. [8] Abu-Shakra M, Urowitz MB, Gladman DD, Gough J. Mortality studies in systemic lupus erythematosus. Results from a single center. 1. Causes of death. J Rheumatol 1995;22:1259–64. [9] Mandell BF. Cardiovascular involvement in systemic lupus erythematosus. Semin Arthritis Rheum 1987;17:126–41. [10] Ward M, Pyun E, Studenski S. Mortality associated with specific clinical manifestations of systemic lupus erythematosus. Arch Int Med 1996;156:1337–48. [11] Bourke BE. Central nervous system involvement in systemic lupus erythematosus. Are we any further forward? Br J Rheum 1993;32:267–8. [12] Hughes GRV. The antiphospholipid syndrome: ten years on. Lancet 1993;342:341–4. [13] Williams W, Wilkins D. Systemic lupus erythematosus in pregnancy. Lancet 1991;338:87–8. [14] Karasz A, Ouellette S. Role strain and psychological well-being in women with systemic lupus erythematosus: a methodological review. Women Health 1995;23:41–57. [15] Bauman A, Barnes C, Schrieber L, Dunsmore J, Brooks P. The unmet needs of patients with systemic lupus erythematosus: planning for patient education. Pat Educ Couns 1989;14:235–42. [16] Iverson GL, Anderson KW. The etiology of psychiatric symptoms in patients with systemic lupus erythematosus. Scan J Rheum 1994;23:277–82. [17] Taylor JO, Gustafson DH, Hawkins R, Pingree S, McTavish F, Wise M, et al. The comprehensive health enhancement support system. Qual Manage Health Care 1994;2:36–43. [18] Foot G, Sanson-Fisher RW. Measuring the unmet needs of people living with cancer. Cancer Forum 1995;19:131–5.
[19] Ware JE, Davies-Avery A, Stewart AL. The measurement and meaning of patient satisfaction: a review of the literature. Health Med Care Serv Rev 1978;1:1–15. [20] Nayfield SG, Ganz PA, Moinpour CM, Cella DF, Hailey BJ. Report from a National Cancer Institute (USA). Workshop on quality of life assessment in cancer clinical trials. Qual Life Res 1992;1:203–10. [21] Iverson GL. Psychopathology associated with systemic lupus erythematosus: a methodological review. Semin Arthritis Rheum 1993;22:242–51. [22] Heading G, Sprogis A, Clancy R, Robinson R. The management of chronic and uncommon conditions: applied to scleroderma and lupus. Hunter Urban Division of Services. [23] Hochberg M, Sutton J. Physical disability and psychosocial dysfunction in systemic lupus erythematosus. J Rheumatol 1988;15:959–64. [24] Sutcliffe N, Clarke AE, Gordon C, Farewell V, Isenberg DA. The association of socio-economic status, race, psychosocial factors and outcome in patients with systemic lupus erythematosus. Rheumatology (Oxford) 1999;38:1130–7. [25] Rainbird KJ. Measuring the perceived needs of patients with advanced, incurable cancer: towards evidenced based care of the dying [Ph.D. dissertation]. Newcastle: University of Newcastle; 1999. [26] Hatcher L. A step-by-step approach to using the SAS system for factor analysis and structural equation modelling. Carey, NC: SAS Institute Inc.; 1994. [27] Nunnally JC. Psychometric theory, second ed. New York: McGraw-Hill; 1978. [28] Fleis JL. Statistical methods for rates and proportions, second ed. New York: John Wiley and Sons; 1981. [29] Tench CM, McCurdie I, White PD, D’Cruz DP. The prevalence and associations of fatigue in systemic lupus erythematosus. Rheumatology 2000;39:1249–54. [30] Australian Institute of Health and Welfare. Australian Hospital Statistics 1999–2000. Canberra; 2001. [31] Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, et al. Evaluation of an instrument to assess the needs of patients with cancer. Cancer 2000;88:217–25. [32] Keller SM. Social support and psychological distress in women with systemic lupus erythematosus [dissertation]. Ann Arbor, UMI: Case Western Reserve University; 1999. [33] Austin JS, Maisiak RS. Health outcome improvements in patients with systemic lupus erythematosus using two telephone counseling interventions. Arthritis Care Res 1996;9:391–9. [34] Braden CJ, McGlone K, Pennington F. Specific psychosocial and behavioural outcomes from the Systemic Lupus Erythematosus Self-Help course. Health Educ Quart (Spec Iss) 1993;20:29– 41.
Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus Neta Moses a,∗ , John Wiggers a , Craig Nicholas b , Jill Cockburn a a
School of Medical Practice and Population Health, University of Newcastle, Wallsend 2287, NSW, Australia b Hunter Centre for Health Advancement, Wallsend, Newcastle, NSW, Australia Received 27 May 2003; received in revised form 19 February 2004; accepted 1 March 2004
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. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Systemic lupus erythematosus; Needs assessment
1. 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) [1–3]. 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,
∗ Corresponding author. Tel.: +61-249246370; fax: +61-249246208. E-mail address: [email protected] (N. Moses).
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 [14–16]. Assessment of patient psychosocial needs is an emerging and important aspect of health care quality assurance
0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.03.015
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[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.
31
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.
2. Method 2.1. Design A cross-sectional descriptive study was undertaken to determine the level and correlates of unmet needs among people with systemic lupus erythematosus. 2.2. 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 generated by doctor referral, hospital outpatient recommendation or self-referral. Based on information given on the annual membership form, members of the Association over 18 years of age, listed as having a diagnosis of SLE and having the ability to comprehend and complete the study procedures were eligible to participate in the study. 2.3. Procedures An information letter and a needs questionnaire were sent to each eligible person by the Lupus Association of New South Wales. Each person was asked to complete the questionnaire and return by reply-paid envelope within 10 days. If the questionnaire had not been returned after 3 weeks, the Association made a reminder telephone call. A test–retest procedure was also utilized 1 week after completion of the first questionnaire, with an identical questionnaire being mailed to those participants who indicated their willingness to complete the SLENQ a second time. 2.4. Measures The Systemic Lupus Erythematosus Needs Questionnaire (SLENQ) was developed, based on the results of a literature review of psycho-social issues associated with having SLE [14,15,21,23], previously validated cancer needs measures [18,25], key informant interviews with SLE patients, four focus groups with SLE patients and pilot testing a draft questionnaire with a convenience sample of 60 people with SLE. The pilot testing showed that 100% of respondents found the questionnaire to be acceptable and appropriate.
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N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
2.5. Needs The questionnaire included 97 items, each of which required the respondent to indicate the extent and magnitude of their need for support or care in the previous 6 months for a particular issue using a five-point scale (1 = no need, 2 = need already satisfied, 3 = low need, 4 = moderate need and 5 = high need). 2.6. Correlates Potential correlates included in the questionnaire were current employment status, sex, age, marital status, levels of primary and tertiary education, rural/urban area of residence, close relatives with SLE or SLE like symptoms, country of birth and parents ethnicity. Apart from age which was measured as a continuous variable, all other correlates were measured as categorical variables. 2.7. Statistical analysis Construct validity of the SLENQ was undertaken by Principal Components Analysis with eigenvalues greater than 1 being considered sufficient to be retained as a factor [26]. Cronbach’s coefficient alpha statistic was used to assess the internal reliability of the questionnaire, with alpha coefficients >0.7 being accepted as the standard for adequacy of domains [27]. Cohen’s unweighted kappa was calculated to assess the significance of intercorrelation between time one and retest. 2.8. Needs The prevalence of respondents unmet needs and their demographic characteristics were summarized as proportions and presented as percentages. For these analyses, response categories were combined into two levels of unmet need—‘some’—(responses 3–5); and ‘moderate/ high’—(responses 4 and 5). 2.9. Correlates In order to separate low level of need from higher level needs the outcome variable ‘level of need’ for each of the seven domains was defined as follows: 1. No or low level of unmet needs: having answered all questions in the domain with response options 1, 2 or 3. 2. Higher level of unmet needs: having answered at least one question in the domain with response option 4 or 5. Seven backward stepwise logistic regressions were conducted to identify correlates of level of unmet needs for each domain while controlling for other variables. Correlates and outcome measures with a probability value of P < 0.25 in chi-squared univariate analyses were entered into these mul-
tivariate models. When evidence of confounding was found, the variables were retained in the model even though they were non-significant at the 0.05 level.
3. Results 3.1. 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 first symptoms and subsequent clinical diagnosis was 6.1 years (S.D. 9.5). Eighteen percent (n = 69) had children aged 0–17 with 11.4% (n = 44) of these having children aged 0–11. Fifty-five percent of participants had attended 4 years or less of high school while 35% had trade and technical qualifications and 34% had graduate degrees. Twenty-nine percent (n = 109) were from rural/remote districts and 71% (n = 268) resided in urban areas. Fifty-two (14%) respondents were from a non-English speaking background and 4 (1%) were of Aboriginal and/or Torres Strait Islander origin. All participants reported being diagnosed with having SLE and the average time since diagnosis was 10.7 years (S.D. 7.4). Comparison with age and gender characteristics of all Association members revealed no differences between respondents and non-respondents. Two hundred and fifty-eight (67%) respondents reported experiencing three or more symptoms such as joint ache, skin rash, fatigue, mouth ulcers, muscle pain, hair loss and weight loss at the time of completing the survey. Only 22 (6%) reported being symptom free at that time although 81% reported taking one or more currently recognized medications for treatment of SLE such as hydroxychloroquine, corticosteroids, azathioprine, methotrexate and various anti-inflammatory drugs. 3.2. Validity and reliability The principal components analysis identified seven factors with eigenvalues greater than 1, which together accounted for more than 53% of the total variance. The seven factors are listed in Table 1 and addressed 85 of the 97 items, with the remaining 12 items failing to load on to any factor (see Table 3). Internal reliability co-efficients (Cronbach alpha) of all seven factors exceeded the minimum alpha co-efficient (0.7) and ranged from 0.77 to 0.96. Kappa values for the test-retest procedure ranged from 0.32 to 0.70 with 85 of 97 items (88%) exceeding 0.4, indicating at least moderate or substantial levels of agreement [28]. A fair level of agree-
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
33
Table 1 Significant correlates in the seven domains Variable
Estimate
S.E.
Odds ratio (95% CI)
Significant correlates of reporting ‘some need’ in the physical domain Current marital status Defacto −0.819 0.510 0.44 (0.16–1.20) Divorced 0.802 0.554 2.23 (0.75–6.61) Single 1.625 0.641 5.08 (1.44–17.88) Widowed −0.485 0.515 0.62 (0.22–1.69) Married Age
0.03
1.03 (1.01–1.05)
Significant correlates of reporting ‘some need’ in the daily living domain Current work Disability/sickness 1.475 0.40 4.37 Household duties 0.577 0.37 1.78 Part time/casual 0.521 0.34 1.68 Retired/pension 0.226 0.45 1.25 Full time Level of school education <4 years high school Four years high school Five years high school Six years high school Age
−0.536 −0.429 −1.390
0.33 0.31 0.48
1.71 (0.89–3.26) 1.53 (0.84–2.82) 4.01 (1.57–10.29)
0.03
0.012
1.03 (1.01–1.05)
0.64
0.32
1.90 (1.02–3.56)
Significant correlates of reporting ‘some need’ in the health services domain Country of birth Australia 0.775 0.28 2.17 (1.25–3.75) Overseas Significant correlates of reporting ‘some need’ in the health information domain Current work Disability/sickness 0.852 0.38 2.35 (1.10–4.99) Household duties 0.434 0.35 1.54 (0.77–3.09) Part time/casual 0.572 0.33 1.77 (0.93–3.37) Retired/pension −0.148 0.43 0.86 (0.37–2.01) Full time Age
−0.009
0.01
Significant correlates of reporting ‘some need’ in the social domain Age −0.022 0.01
0.99 (0.97–1.01) 0.98 (0.96–0.99)
Significant correlates of reporting ‘some need’ in the employment/financial domain Current work Disability/sickness 2.068 0.41 7.91 (3.54–17.68) Household duties 0.416 0.38 1.52 (0.71–3.22) Part time/casual 0.684 0.34 1.98 (1.01–3.90) Retired/pension −0.012 0.51 0.99 (0.36–2.70) Full time Age
−0.025
0.01
S.E.: standard error, CI: confidence interval, d.f.: degrees of freedom.
d.f.
P-value
12.879
4
0.011
7.438
1
0.006
15.890
4
0.003
8.662
3
0.341
4.499
1
0.034
6.658
1
0.009
4.063
1
0.043
7.727
1
0.005
9.687
4
0.046
0.657
1
0.4176
9.541
1
0.002
33.976
4
(2.01–9.52) (0.87–3.66) (0.86–3.29) (0.52–3.04)
Significant correlates of reporting ‘some need’ in the psychological spiritual/existential domain Location Rural −0.63 0.25 0.53 (0.33–0.86) Urban Non-English speaking background No Yes
X2
0.98 (0.95–0.99)
0.001 0.047
4.637
1
0.031
34
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38
Table 2 Proportion of participants with at least one need per domain rated 3–5 (some need) and 4, 5 (moderate/high need) (N = 386) Domain
Physical Daily Psychological/spiritual/existential Health services Health information Social support Employment/financial
Some need
Moderate/high need
%
95% CI
%
95% CI
94.3 71.5 90.9 79.8 77.5 78.5 54.1
91.98–96.62 66.47–75.53 87.80–93.60 75.79–83.81 73.33–81.67 74.40–82.60 49.12–59.08
84.0 46.4 71.0 60.1 58.0 54.7 36.0
80.34–87.66 41.42–51.38 66.47–75.53 55.21–64.99 53.07–62.93 49.73–59.67 31.21–40.79
ment (K = 0.2–0.4) was found for the remaining 12 items (12%). 3.3. Prevalence of perceived unmet needs A wide variation in prevalence of unmet needs was evident across all 97 items with childminding facilities at the hospital or clinic having the lowest prevalence of some unmet need at 4% and need for help with tiredness having the highest prevalence at 81%. Eighty-eight percent of items had at least a 25% prevalence of some unmet need and 45% of items had at least 25% prevalence of moderate to high unmet need. Ninety-four percent of participants reported having at least one unmet need, and 83% had at least one moderate/high need (Table 2). The 10 items with the highest prevalence of some and moderate-to-high unmet need are shown in Table 3. Of these 10 items, 5 were related to the psychological needs domain and 3 items were related to the physical domain. The prevalence of some need for each of the top ten items was 63% or greater, and the prevalence of moderate-to-high need was 35% or greater. 3.4. Physical domain The proportion of respondents reporting some unmet need for issues addressed by physical symptoms varied from 33% for maintaining dental health to 81% for tiredness (Table 3). All 13 items had at least 25% of some unmet physical need and 69% of items had at least 25% of respondents reporting moderate/high unmet need. Eighty-one percent of participants had an unmet need for help with tiredness, with 54% reporting a moderate/high level of such need. Unmet needs arising from pain, sleeping problems and headaches were reported by between 59 and 73% of respondents, with between 32 and 53% indicating a moderate/high level of unmet need with these issues. Logistic regression analysis revealed that participants who were single had five times the odds of having higher unmet needs in the physical domain than those who were married (OR = 5.08, CI = (1.44, 17.88)), while the odds of having higher unmet needs increased with increasing age (OR = 1.03, CI = (1.01, 1.05)).
3.5. Daily living issues The proportion of respondents reporting some unmet needs for daily living issues varied from 17% for reading difficulties to 61% for help with work around the home. Fifty percent of the eight items had at least 25% prevalence of some unmet daily living need but only one item had >25% prevalence of moderate/high unmet need (Table 3). Sixty-one percent of participants had an unmet need for help with working around the home with 33% reporting a moderate/high level of such need. Thirty-seven percent reported some need for help with food preparation (15% moderate/high need) and 41% had some need for help with shopping (23% moderate/high need). Those participants on disability or sickness benefits had over four times the odds of having higher unmet need in the daily living domain than those who worked full-time (OR = 4.37, CI = (2.00, 9.52)), while the odds of having higher unmet needs increased with increasing age (OR = 1.02, CI = (1.00, 1.05)). Participants who had completed 6 years of high school had four times the odds of having higher unmet need in the daily living domain than those who had completed 5 years of high school (OR = 4.01, CI = (1.58, 10.22)). 3.6. Psychological/spiritual/existential The proportion of respondents reporting some unmet needs for help with psychological/spiritual/existential issues varied from 20% for a need for help with clarifying spiritual beliefs to 72% for a need for strategies to help deal with fears of disease exacerbation and for coping with the frustration of not being able to do what they used to do. All but one of the 20 items had at least 25% prevalence of some unmet psychological/spiritual/existential need, and 65% of items had at least 25% of moderate/high unmet need (Table 3). A need for support for issues arising from the inability to undertake previous activities was expressed by 72% of respondents, with 50% having a moderate to high level of need. Sixty-nine percent reported unmet needs in dealing with anxiety and stress and 68% required assistance with
N. Moses et al. / Patient Education and Counseling 57 (2005) 30–38 Table 3 Ten or less most prevalent unmet needs per domain (N = 386) Item
Some need (%)
Moderate/ high need (%)
Physical Tirednessa Paina Sleeping problemsa Headaches Skin rashes Dry mouth Shortness of breath Mouth ulcers Urinary frequency Dental health
81 73 70 59 51 47 46 41 37 33
54 53 40 32 29 24 25 19 23 18
Daily living issues Work around home Shopping Food preparation Driving difficulty Writing problems Transport to appointments Speaking problems Reading difficulties
61 41 37 26 23 21 16 17
33 23 15 14 11 11 6 8
Psychological/spiritual/existential Unable to do what useda Fears disease flarea Anxiety and stressa Feeling down/depresseda Fears physical disabilitya Uncertainty re future Changes in appearance Keeping positive outlook Feeling in control Feeling useless
72 72 69 68 65 57 54 54 51 50
50 42 42 42 41 35 29 29 27 26
Health services Reassurance re normality Open discussion with doctors Knowing when to see doctor Talking to one professional Rapid test result information Concerns to be taken seriously Information re treatment effects Discussion time with doctors GP not understanding SLE Selecting medical help
47 44 44 41 41 41 41 38 38 35
26 31 26 29 28 25 23 22 23 25
Health information Information reservices and benefits Guidance on disease phase activity Obtaining self-help information Support for complementary therapy Relaxation classes Dietary information Getting written information Obtaining current information Drop in counseling Counseling services
48 47 45 44 42 41 40 39 39 36
31 27 27 25 23 22 24 24 22 16
Social support Explaining SLE unpredictabilitya Others coping with SLE Ability to participate in social activity Expressing feeling with others
64 53 51 48
41 31 29 28
35
Table 3 (Continued ) Item
Some need (%)
Moderate/ high need (%)
46 36 35 33 33 24
23 24 18 19 19 14
Employment Meeting extra costs of disease Meeting living expenses Maintaining job performance Gaining employment
39 31 29 13
24 19 18 9
12 items without primary loading Concerns re other health problemsa Coping with the cold Opportunity to talk with someone similar Digestive problems Difficulty thinking clearly Co-workers understanding SLE Easy car parking at hospital Nausea and/or vomiting Information on mobility parking Inf. on implementing changes to home Pregnancy information with SLE Child-minding at the hospital or clinic
63 54 53 50 45 32 30 26 22 21 8 4
35 32 29 29 18 19 21 12 13 13 6 3
Coping with attitude changes to self Support from partner/children Maintaining friendships Maintaining family relationships Coping with change in sexual relations Sexual information for partner
a
Among the 10 highest unmet needs reported in the last 6 months.
depression. Seventy-two percent had some need for help in dealing with the fear that the disease would worsen and 65% were concerned about potential physical disability. Slightly less than half of all respondents reported a moderate/high level of unmet need for help with the latter two issues. Participants from an English speaking background had nearly twice the odds of having higher unmet needs in this domain than those who were from a non-English speaking background (OR = 1.90, CI = (1.02, 3.56)). Participants from urban areas had greater odds of having higher unmet need than those from rural regions (OR = 1.89, CI = (1.16, 3.08)). 3.7. Health services The proportion of respondents reporting some unmet need for health services varied from 17% for privacy rights to 47% for the need to be reassured by doctors regarding the normalcy of feelings. Ninety-three percent of the 15 items had at least 25% prevalence of some unmet health service need and 47% of items had at least 25% prevalence of moderate/high unmet need (Table 3). Forty-seven percent of participants had an unmet need for help with being reassured by their doctors that their feelings are normal, with 26% reporting a moderate/high level of need. Forty-four percent of respondents reported some need for help with both knowing when to see their doctor and being able to have an open discussion with the
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doctor with 26 and 31% expressing moderate/high levels of need, respectively. Participants who were born overseas were twice as likely to have some unmet need for help with health services than those born in Australia (OR = 2.17, CI = (1.25, 3.75)). 3.8. Health information The proportion of respondents reporting some unmet needs for health information varied from 27% for the need for information on support groups to 48% for the need for information about services and benefits. All of the 13 items had at least 25% prevalence of some unmet health information need, and 31% of items had at least 25% of moderate/high unmet needs (Table 3). Forty-eight percent of participants reported an unmet need for help in obtaining information on services and benefits with 31% expressing a moderate to high need for help with addressing this issue. Forty-seven percent of participants expressed the need for guidance on activities during the different phases of the disease (27% moderate/high), while 45% needed help in obtaining self-help information (27% moderate/high). Those participants on disability or sickness benefits had over twice the odds of having higher unmet need for health information compared to those in full-time employment (OR = 2.345, CI = (1.10, 4.99)). 3.9. Social support The proportion of respondents reporting some unmet needs concerning social support varied from 24% for sexual information for partner, to 53% for others coping with SLE. All 10 items had at least 5% prevalence of some unmet social support need, and 40% of items had at least 25% of moderate/high unmet needs (Table 3). Sixty-four percent of respondents had some (41% moderate/high) need for help in explaining their circumstances to the people around them. Fifty-three percent (31% moderate/high) required help in assisting others to cope with their situation. Over half (51%) expressed difficulty in participating in social activities, while 48% had some need for help in expressing their feelings to other people. The odds of having higher unmet needs in the social domain decreased as age increased (OR = 0.98, CI = (0.96–0.99)). 3.10. Employment/financial The proportion of respondents reporting some unmet needs in the employment/financial arena varied from 13% for gaining employment to 39% for unmet needs in meeting the extra costs of disease. Three of the four items had at least 25% prevalence of some unmet employment/financial needs, however none of the items had at least 25% moderate/high need (Table 3).
Thirty-nine percent of respondents had some need for help in meeting the extra costs of the disease (24% moderate/high need) while 31% needed help with meeting living expenses (19% moderate/high need). Twenty-nine percent expressed some need for help in maintaining job performance with 18% having high/moderate need. The odds of having higher unmet need in the employment/financial domain were nearly eight times greater for those on disability or sickness benefits than those who worked full-time (OR = 7.91, CI = (3.54, 17.67)) while those who worked part-time or casual had nearly twice the odds of having higher unmet needs (OR = 1.98, CI = (1.01, 3.90)). The odds of having higher unmet need in the employment/financial domain decreased as age increased (OR = 0.98, CI = (0.95, 0.99)).
4. 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 help with psychosocial issues is supported by other studies and may be affiliated in part with the flare-remission nature of SLE and the wide range of disease manifestations. A recent survey of SLE hospital out-patients in England also reported that 81% of respondents suffered from fatigue [29], and the level of need for help with depression in our study is the same as that in the earlier Australian survey [15]. The lack of change in levels of unmet need for psycho-social issues between this earlier study and the current one is a cause for concern. Second, the current study has highlighted the association between employment and SLE. There were more older participants in the present study (57% over the age of 50) compared with the earlier study by Bauman et al. (40%), which may be reflective of the improving long term survival rate. Despite this, the current study identified 41% of respondents in full-time or part-time work compared to one-third of participants in the previous study. This slightly higher employment rate suggests that the employment capacity among people with SLE may have increased since the earlier study. However, as these rates are markedly lower than the employment rates for this age group in the general population (62%), and 52% of respondents indicated that SLE affected their ability to work, it appears that SLE retains a significant negative effect on this important element of normal functioning. Participants who worked full-time reported significantly less need in the daily living, health information and employment/financial domains than those on disability or sickness benefits. This may reflect the degree of disease
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severity and/or treatment efficacy of those respondents who are able to participate more fully in the workplace. Third, in overall terms the very high prevalence of unmet needs in this study demonstrate a substantial gap in the capacity of health care and other services to meet the range of non-hospital based care needs of patients, particularly those relating to psycho-social, psychological and self-help management requirements. The prevalence of unmet need identified in this study is greater than the prevalence of unmet needs in studies from other patient groups. For example Foot (1995) and Rainbird (1999) found lower levels of anxiety, depression and fatigue in patients with cancer. Despite the older age of this cohort relative to that reported by Bauman et al. (1989) only 20% reported having been hospitalized for their SLE in the previous year. This lower incidence compared to a figure of 32% reported by Bauman et al. may be a result of improved management strategies, an improvement that is reflected in the reduction in mortality and morbidity rates in SLE [8,2]. However, the number of reported annual hospital separations in the SLE study group (160) continues to exceed the expected general population rate [30]. There are some limitations to the present study that should be kept in mind when interpreting the results. First, given that we used a convenience sample of people with SLE, the generalisability of the results to the total (albeit unknown) population of SLE sufferers is not known. Assuming a prevalence of SLE in the community between 21.7 and 122 per 100,000 [1–3] the current study’s sample of 386 drawn from a state adult population of 5 million could represent between 6 and 36% of those with SLE in New South Wales. The demographic and clinical characteristics of the study sample obtained in this study is similar to those obtained in previous studies [15,21]. However, a self-selection bias is inherent in drawing a sample from a support organization, as members of a support organization may have either higher level of needs, or may be more active and successful help seekers, resulting in lower levels of reported need. Second, the consent rate of 65%, although consistent with the results of similar needs assessment surveys among people with other illnesses [31] necessitates caution when interpreting the study results. Apart from age and sex, no demographic or clinical data were obtained from non-consenters and it is not possible to ascertain whether any differences existed in these parameters between those who responded to the survey and those who did not. In order to address the study limitations of generalisability and possible age bias, a need exists for further research of patients drawn from other settings where the risk of self selection bias can be minimized.
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important that health care providers are aware of the extent and nature of needs experienced by their patients. Utilizing a comprehensive needs assessment questionnaire for all newly diagnosed SLE patients and regularly for existing SLE sufferers could help carers to achieve this. Particularly needy groups appear to be older patients and those who are not employed. Second, having identified a patients unmet needs, practitioners need to respond by providing information, referral and appropriate interventions that address those needs. Practitioners may also need to consider modification of their treatment protocols to minimize, where possible, the negative consequences of treatment for patients. Previous studies have demonstrated that interventions directed at reducing functional disability and increasing social support both lower psychological distress in SLE patients and enhance clinical outcomes [32–34]. The present study suggests a basis for targeting such protocols to those patients who are on disability or sickness benefits, the elderly and those who are single. Although the results of this study suggest a clear need for practitioners to respond to the unmet needs of their patients, very limited evidence exists regarding interventions that are efficacious in addressing these needs. The results of this study therefore suggest a clear need for the development and testing of such interventions. Very limited research has been undertaken in this area. Similarly, a need exists for longitudinal studies to provide a greater understanding of the temporal, social and clinical factors associated with the level and nature of patient needs. Finally, support services for people with SLE in Australia are primarily supplied by the non-profit associations and by education programs conducted at selective major hospitals, usually through rheumatology or immunology departments. This level of service has remained largely unchanged over the past decade. The high level of unmet need demonstrated by this study demonstrates an opportunity for such organizations and services to review the nature of their service provision to ensure that what is provided is appropriate to the needs of their members, is based upon evidence of effectiveness, and is appropriately targeted. 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.
4.1. Practice implications The primary indication for practice from these findings is the urgent requirement for practitioners to respond to the high levels of unmet needs experienced by their patients. Such a response should take at least two forms. First, it is
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