This paper considers the experiences of people with lupus in comparison with those with diabetes, and discusses the impact of lupus specialist nurses in information-giving and education under the guise of ‘just in case’ vs. ‘just in time’. Now recognized as a difficult condition to diagnose, lupus can lead to significant worry and distress especially during delays to diagnosis and times of high disease activity. Providing appropriate, individualized information to people with lupus is embedded in specialist nursing practice and enables individuals to use the tools of self-management approaches in gaining control over everyday symptoms.
ThumbooJStrandV. Health-related quality of life in patients with systemic lupus erythematosus: An update. Ann Acad Med2007; 36: 115–122.
4.
TolozaMASequeiraWJollyM. Treatment of lupus: Impact on quality of life. Curr Rheumatol Rep2011; 13: 324–337.
5.
BennettJKFuertesJNKeitelMPhillipsR. The role of patient attachment and working alliance on patient adherence, satisfaction, and health related quality of life in lupus treatment. Patient Educ Couns2011; 85: 53–59.
6.
MattssonMMollerBStammTGardGBostromC. Uncertainty and opportunities in patients with established systemic lupus erythematosus: A qualitative study. Musculoskeletal Care2012; 10: 1–12.
7.
MaddisonP. Is it SLE? Balliere’s best practice & research. Clin Rheumatol2002; 16: 167–180. Review.
8.
WaldronNBrownSJHewlettSElliottBMcHughNJMcCabeCS. ‘To suddenly have a name for this thing…was wonderful’: The patient’s experience of receiving a diagnosis of systemic lupus erythematosus. Musculoskeletal Care2012; 10: 135–141.
9.
TaiebOBricouOBaubetTGaboulaudVGalBMouthonL. Patients’ beliefs about the causes of systemic lupus erythematosus. Rheumatology2010; 49: 592–599.
10.
HaleEDTreharneGJLyonsAC. ‘Joining the dots’ for patients with systemic lupus erythematosus: Personal perspectives of health care from a qualitative study. Ann Rheum Dis2006; 65: 585–589.
11.
WaldronNBrownSJHewlettSElliottBMcHughNJMcCabeCS. “It’s more scary not to know”: A qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis. Musculoskeletal Care2011; 9: 228–238.
12.
RobinsonDAguilarDSchoenwetterMDuboisRRussakSRamsey-GoldmanR. Impact of systemic lupus erythematosus on health, family and work: The patient perspective. Arthritis Care Res2010; 62: 266–273.
13.
LongoDR. Understanding health information, communication and information seeking of patients and consumers: A comprehensive and integrated model. Health Expect2005; 8: 189–194.
14.
MishelMH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch1990; 22: 256–262.
15.
BrownSJ. Practical approaches to managing lupus. Practice Nurse2006; 32: 26–29.
16.
Danoff-BurgAFriedbergF. Unmet needs of patients with systemic lupus erythematosus. Behav Med2009; 35: 13–13.
17.
MosesNWiggersJNicholasCCockburnJ. Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus. Patient Educ Couns2005; 57: 30–38.
18.
HibbardHMahoneyERStockRTuslerM. Do increases in patient activation results in improved self-management behaviours?Health Serv Res2007; 42: 1443–1463.
19.
McCorkleRErcolanoELazenbyMSchulman-GreenDSchillingLSLorigK. Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin2011; 61: 50–62.
20.
MurphyKCaseyDDineenSLawtonJBrownF. Participants’ perceptions of the factors that influence diabetes self-management following a structured education (DAFNE) programme. J Clin Nurs2011; 20: 1282–1292.
21.
HewlettSAmblerNAlmeidaC. Self-management of fatigue in rheumatoid arthritis: A randomised controlled trial of group cognitive-behavioural therapy. Ann Rheum Dis2011; 70: 1060–1067.
22.
DowCMRochePAZieblandS. Talk of frustration in the narratives of people with chronic pain. Chronic Illn2012; 8: 176–191.
23.
Arthritis and Musculoskeletal Alliance (ARMA). Standards of Care for people with Connective Tissue Diseases. 2004. www.arma.uk.net (accessed 20.11.2012).
24.
ThwaitesCRyanSHassellA. A survey of rheumatology nurse specialists providing telephone helpline advice within England and Wales. Rheumatology2008; 47: 522–525.
25.
RCN. Telephone advice lines for people with long term health conditions. RCN Publications, 2006.
26.
BrownSJMcCabeCSHewlettS. Rheumatology telephone helplines: Patients and health professionals’ requirements. Musculoskeletal Care2006; 4: 24–37.
27.
KarlsonEWLiangMHEatonHHuangJFitzgeraldLRogersMP. A randomized clinical trial of a psycho-educational intervention to improve outcomes in systemic lupus erythematosus. Arthritis Rheum2004; 50: 1832–1841.
28.
SohngKY. Effects of a self-management course for patients with systemic lupus erythematosus. J Adv Nurs2003; 42: 479–483.
29.
BrownSJSomersetMEMcCabeCSMcHughNM. The impact of group education on participants’ management of their disease in lupus and scleroderma. Musculoskeletal Care2004; 2: 207–217.
