Persistence of unmet need for care among people with systemic lupus erythematosus: A longitudinal study

Quality of Life Research

Volumn 17, Issue 6, 2008, Pages 867-876

  Moses, Neta ^a   Wiggers, John ^a   Nicholas, Craig ^b  

^a UNIVERSITY OF NEWCASTLE   (Australia)

^b HUNTER NEW ENGLAND POPULATION HEALTH   (Australia)

Author keywords

Disease activity; Longitudinal study; Needs assessment; Needs questionnaire; Systemic lupus erythematosus

Indexed keywords

ADULT; AGED; ARTICLE; CONTROLLED STUDY; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE NEED; HEALTH SURVEY; HUMAN; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; PREVALENCE; PRIORITY JOURNAL; QUESTIONNAIRE; SCORING SYSTEM; SYMPTOMATOLOGY; SYSTEMIC LUPUS ERYTHEMATOSUS;

AGED; FEMALE; HEALTH CARE SURVEYS; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HEALTH STATUS INDICATORS; HUMANS; LONGITUDINAL STUDIES; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PROSPECTIVE STUDIES; QUESTIONNAIRES; TIME FACTORS;

EID: 48449106419     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-008-9361-2     Document Type: Article

References (35)

1. AJG Swaak HG van den Brink RJT Smeenk K Manger JR Kalden S Tosi 1999 Systemic lupus erythematosus: clinical features in patients with a disease duration of over 10 years, first evaluation Rheumatology 38 953 958 10.1093/rheumatology/38.10.953
2. I Haq DA Isenberg 2002 How does one assess and monitor patients with systemic lupus erythematosus in daily clinical practice? Best Practice & Research. Clinical Rheumatology 16 181 194 10.1053/berh.2002.0220
3. J Klippel 1990 Systemic lupus erythematosus: treatment-related complications superimposed on chronic disease Journal of the American Medical Association 263 1812 1815 10.1001/jama.263.13.1812
4. J Pierretti MJ Roman RB Devereux MD Lockshin MK Crow SA Paget 2007 Systemic lupus erythematosus predicts increased left ventricular mass Circulation 116 419 426 10.1161/CIRCULATIONAHA.106.673319
5. MM Ward AS Marx NN Barry 2002 Psychological distress and changes in the activity of systemic lupus erythematosus Rheumatology 41 184 188 10.1093/rheumatology/41.2.184
6. M Petri M Genoves E Engle M Hochberg 1991 Definition, incidence and clinical description of flare in systemic lupus erythematosus Arthritis and Rheumatism 34 937 944 10.1002/art.1780340802
7. M Petri J Buyon M Kim 1999 Classification and definition of major flares in systemic lupus erythematosus clinical trials Lupus 8 685 691 10.1191/096120399680411281
8. CK Abrass KM Nies JS Louie WA Border RJ Glassock 1980 Correlation and predictive accuracy of circulating immune complexes with disease activity in patients with systemic lupus erythematosus Arthritis and Rheumatism 23 273 282 10.1002/art.1780230302
9. M Czar M Engler 1997 Perceived learning needs of patients with coronary artery disease using a questionnaire assessment tool Heart Lung 26 109 117
10. S Aranda P Schofield L Weih P Yates D Milne R Faulkner N Voudouris 2005 Mapping the quality of life and unmet needs of urban women with metastatic breast cancer European Journal of Cancer Care 14 211 222
11. Rainbird, K. (1999). Measuring the perceived needs of patients with advanced, incurable cancer: towards evidenced based care of the dying. Dissertation, University of Newcastle
12. M Browall M Carlsson G Horvath 2004 Information needs of women with recently diagnosed ovarian cancer-a longitudinal study European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society 8 200 207
13. LM McCracken EM Semenchuk VL Goetsch 1995 Cross-sectional and longitudinal analyses of coping responses and health status in persons with systemic lupus erythematosus Behavioral Medicine 1995 20 179 187
14. N Sutcliffe AE Clarke C Levinton C Frost C Gordon DA Isenberg 1999 Associates of health status in patients with systemic lupus erythematosus The Journal of Rheumatology 11 26 2352 2356
15. N Moses J Wiggers J Cockburn C Nicholas 2007 Development and psychometric analysis of the systemic lupus erythematosus needs questionnaire (SLENQ) Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 16 461 466
16. N Moses J Wiggers J Cockburn C Nicholas 2005 Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus Patient Education and Counseling 57 30 38
17. H Stein K Walters A Dillon M Schulzer. 1980 Systemic lupus erythematosus-a medical and social profile The Journal of Rheumatology 13 570 576
18. Wallace, D. (1995). The lupus book. New York: Oxford University Press.
19. RD Hays M Brodsky MF Johnston KL Spritzer K Hui 2005 Evaluating The statistical significance of health-related quality-of-life change in individual Patients Evaluation & the Health Professions 28 160 171
20. KH Costenbader D Brome D Blanch V Gall E Karlson MH Liang 2007 Factors determining participation in prevention trials among systemic lupus erythematosus: a qualitative study Arthritis and Rheumatism 57 49 55
21. E Yelin L Trupin P Katz L Criswell J Yazdany J Gillis 2007 Work dynamics among persons with systemic lupus erythematosus Arthritis and Rheumatism 57 56 63
22. A Bauman C Barnes L Schrieber J Dunsmore P Brooks 1989 The unmet needs of patients with systemic lupus erythematosus: planning for patient education Patient Education and Counseling 14 235 42
23. P Panopalis M Petri S Manzi DA Isenberg C Gordon JL Senecal 2005 The systemic lupus erythematosus tri-nation study: longitudinal changes in physical and mental well-being Rheumatology 44 751 755
24. B Kuriya D Gladman D Ibanez M Urowitz 2008 Quality of life over time in patients with systemic lupus erythematosus Arthritis and Rheumatism 59 181 185
25. KP Leong KO Kong BYH Thong ET Thong ET Koh TY Lian 2005 Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL) Rheumatology 44 1267 1276
26. JD Holden 2001 Hawthorne effects and research into professional practice Journal of Evaluation in Clinical Practice 7 65 70
27. T Hasan M Pertovaara U Yli-Kerttula T Lukkaala M Korpela 2004 Seasonal variation of disease activity of systemic lupus erythematosus in Finland: a 1 year follow up study Annals of the Rheumatic Diseases 63 1498 1500
28. E Maeshima XM Liang H Otani M Mune S Yukawa 2002 Effect of environmental changes on oxidative deoxyribonucleic acid (DNA) damage in systemic lupus erythematosus Archives of Environmental Health 57 425 428
29. AB Voss A Green P Junker 1999 Systemic lupus erythematosus in the county of Fynen. (Danish). An epidemiological study Ugeskrift for Laeger 161 3837 3840
30. KM Uramoto CJ Michet Jr J Thumboo J Sunku WM O'Fallon SE Gabriel 1999 Trends in the incidence and mortality of systemic lupus erythematosus Arthritis and Rheumatism 42 46 50
31. NM Anstey I Bastian H Dunkley BJ Currie 1993 Systemic lupus erythematosus in Australian Aborigines: high prevalence, morbidity and mortality Australian and New Zealand Journal of Medicine 23 646 651
32. Australian Bureau of Statistics. (2002). 2001 Census community profile: New South Wales. Canberra: ABS.
33. N Hopkinson M Doherty RJ Powell 1994 Clinical features and race specific incidence/prevalence rates of systemic lupus erythematosus in a geographically complete cohort of patients Annals of the Rheumatic Diseases 53 675 680
34. JD Fitzgerald JM Grossman 1999 Validity and reliability of retrospective assessment of disease activity and flare in observational cohorts of lupus patients Lupus 8 638 644
35. Gustafson, D. (1991). Expanding on the role of patient as consumer. QRB, October, pp. 324-325