Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
Journal of Clinical Immunology
Published in: Journal of Clinical Immunology 7/2015

Open Access 01-10-2015 | Original Research

Perceived Health in Patients with Primary Immune Deficiency

Authors: Filiz Odabasi Seeborg, Roann Seay, Marcia Boyle, John Boyle, Christopher Scalchunes, Jordan Scott Orange

Published in: Journal of Clinical Immunology | Issue 7/2015

Login to get access

Abstract

Purpose

Perceived health (PH) is a subjective measure of global health of individuals. While many studies have evaluated outcomes in patients with primary immune deficiency (PID), published literature evaluating PH among patients with PID is sparse. We evaluated the results of the largest self-reported survey of patients with PID to determine the factors that may contribute to differences in PH.

Methods

Data from a National Survey of Patients with Primary Immune Deficiency Diseases conducted by the Immune Deficiency Foundation was studied. Multivariate logistic regression was employed for data analysis.

Results

Thirty percent of the patients perceived their health status as excellent or very good (EVG), 31 % as good (G), and 39 % as fair, poor or very poor (P). Older patients were less likely to have EVG-PH compared to G-PH. Ones with college degrees were more likely to have P-PH compared to G-PH, and less likely to have EVG-PH. Patients who were acutely ill and hospitalized in the past 12 months, ones with limited activity, and chronic diseases, were more likely to have P-PH compared to G-PH. Patients with “on demand” access to specialty care and ones on regular IVIG had higher OR of having EVG-PH as opposed to G-PH. Patients cared for mostly by an immunologist were less likely to have P-PH compared to G-PH.

Conclusions

Our results emphasize the importance of PH in clinical practice. We suggest that recognizing the factors that drive PH in patients with PID is important for the development of disease prevention and health promotion programs, and delivery of appropriate health and social services to individuals with PID.
Literature
1.
Jylha M. What is self-rated health and why does it predict mortality? Towards a unified conceptual model. Soc Sci Med. 2009;69(3):307–16.CrossRefPubMed
2.
Moss NE. Gender equity and socioeconomic inequality: a framework for the patterning of women’s health. Soc Sci Med. 2002;54(5):649–61.CrossRefPubMed
3.
Idler EL, Benyamini Y. Self-rated health and mortality: a review of twenty-seven community studies. J Health Soc Behav. 1997;38(1):21–37.CrossRefPubMed
4.
Idler EL, Russell LB, Davis D. Survival, functional limitations, and self-rated health in the NHANES I Epidemiologic Follow-up Study, 1992. First National Health and Nutrition Examination Survey. Am J Epidemiol. 2000;152(9):874–83.CrossRefPubMed
5.
Shields M, Shooshtari S. Determinants of self-perceived health. Health Rep. 2001;13(1):35–52.PubMed
6.
7.
Smith PM, Glazier RH, Sibley LM. The predictors of self-rated health and the relationship between self-rated health and health service needs are similar across socioeconomic groups in Canada. J Clin Epidemiol. 2010;63(4):412–21.CrossRefPubMed
8.
Miilunpalo S, Vuori I, Oja P, Pasanen M, Urponen H. Self-rated health status as a health measure: the predictive value of self-reported health status on the use of physician services and on mortality in the working-age population. J Clin Epidemiol. 1997;50(5):517–28.CrossRefPubMed
9.
Wilcox VL, Kasl SV, Idler EL. Self-rated health and physical disability in elderly survivors of a major medical event. J Gerontol Ser B Psychol Sci Soc Sci. 1996;51(2):S96–104.CrossRef
10.
Unden AL, Elofsson S. Health from the patient’s point of view. How does it relate to the physician’s judgement? Fam Pract. 2001;18(2):174–80.CrossRefPubMed
11.
12.
Goldberg P, Gueguen A, Schmaus A, Nakache JP, Goldberg M. Longitudinal study of associations between perceived health status and self reported diseases in the French Gazel cohort. J Epidemiol Community Health. 2001;55(4):233–8.PubMedCentralCrossRefPubMed
13.
Tabolli S, Giannantoni P, Pulvirenti F, La Marra F, Granata G, Milito C, et al. Longitudinal study on health-related quality of life in a cohort of 96 patients with common variable immune deficiencies. Front Immunol. 2014;5:605.PubMedCentralCrossRefPubMed
14.
Nguyen TV, Bosset JF, Monnier A, Fournier J, Perrin V, Baumann C, et al. Determinants of patient satisfaction in ambulatory oncology: a cross sectional study based on the OUT-PATSAT35 questionnaire. BMC Cancer. 2011;11:526.PubMedCentralCrossRefPubMed
15.
Westaway MS, Rheeder P, Van Zyl DG, Seager JR. Interpersonal and organizational dimensions of patient satisfaction: the moderating effects of health status. Int J Qual Health Care : J Int Soc Qual Health Care / ISQua. 2003;15(4):337–44.CrossRef
16.
Cesari M, Onder G, Zamboni V, Manini T, Shorr RI, Russo A, et al. Physical function and self-rated health status as predictors of mortality: results from longitudinal analysis in the ilSIRENTE study. BMC Geriatr. 2008;8:34.PubMedCentralCrossRefPubMed
17.
Nery Guimaraes JM, Chor D, Werneck GL, Carvalho MS, Coeli CM, Lopes CS, et al. Association between self-rated health and mortality: 10 years follow-up to the Pro-Saude cohort study. BMC Public Health. 2012;12:676.PubMedCentralCrossRefPubMed
18.
Desalvo KB, Muntner P. Discordance between physician and patient self-rated health and all-cause mortality. Ochsner J. 2011;11(3):232–40.PubMedCentralPubMed
19.
Benyamini Y. Why does self-rated health predict mortality? An update on current knowledge and a research agenda for psychologists. Psychol Health. 2011;26(11):1407–13.CrossRefPubMed
20.
Malterud K, Hollnagel H. Positive self-assessed general health in patients with medical problems. A qualitative study from general practice. Scand J Prim Health Care. 2004;22(1):11–5.CrossRefPubMed
21.
Kennedy BP, Kawachi I, Glass R, Prothrow-Stith D. Income distribution, socioeconomic status, and self rated health in the United States: multilevel analysis. BMJ. 1998;317(7163):917–21.PubMedCentralCrossRefPubMed
22.
Da Costa D, Clarke AE, Dobkin PL, Senecal JL, Fortin PR, Danoff DS, et al. The relationship between health status, social support and satisfaction with medical care among patients with systemic lupus erythematosus. Int J Qual Health Care : J Int Soc Qual Health Care / ISQua. 1999;11(3):201–7.CrossRef
23.
Putcha N, Puhan MA, Hansel NN, Drummond MB, Boyd CM. Impact of co-morbidities on self-rated health in self-reported COPD: an analysis of NHANES 2001–2008. COPD. 2013;10(3):324–32.PubMedCentralCrossRefPubMed
24.
Tang LY, Nabalamba A, Graff LA, Bernstein CN. A comparison of self-perceived health status in inflammatory bowel disease and irritable bowel syndrome patients from a Canadian national population survey. Canadian journal of gastroenterology. J Can Gastroenterol. 2008;22(5):475–83.
25.
Sullivan PW, Smith KL, Ghushchyan VH, Globe DR, Lin SL, Globe G. Asthma in USA: its impact on health-related quality of life. J Asthma : Off J Assoc Care of Asthma. 2013;50(8):891–9.CrossRef
26.
Howard V, Greene JM, Pahwa S, Winkelstein JA, Boyle JM, Kocak M, et al. The health status and quality of life of adults with X-linked agammaglobulinemia. Clin Immunol. 2006;118(2–3):201–8.CrossRefPubMed
27.
Soresina A, Nacinovich R, Bomba M, Cassani M, Molinaro A, Sciotto A, et al. The quality of life of children and adolescents with X-linked agammaglobulinemia. J Clin Immunol. 2009;29(4):501–7.CrossRefPubMed
28.
Xiao H, Barber JP. The effect of perceived health status on patient satisfaction. Value Health : J Int Soc Pharmacoecon Outcomes Res. 2008;11(4):719–25.CrossRef
29.
Hunt SM, McKenna SP, McEwen J, Backett EM, Williams J, Papp E. A quantitative approach to perceived health status: a validation study. J Epidemiol Community Health. 1980;34(4):281–6.PubMedCentralCrossRefPubMed
30.
Segovia J, Bartlett RF, Edwards AC. An empirical analysis of the dimensions of health status measures. Soc Sci Med. 1989;29(6):761–8.CrossRefPubMed
31.
Tsai MC, Lin SH, Chou YY, Lin SJ. Exploration of health status, healthcare utilization, and health service expectations among Taiwanese adolescents. Eur J Pediatr. 2014;173(2):187–96.CrossRefPubMed
32.
Dominick KL, Ahern FM, Gold CH, Heller DA. Relationship of health-related quality of life to health care utilization and mortality among older adults. Aging Clin Exp Res. 2002;14(6):499–508.CrossRefPubMed
33.
McFadden E, Luben R, Bingham S, Wareham N, Kinmonth AL, Khaw KT. Does the association between self-rated health and mortality vary by social class? Soc Sci Med. 2009;68(2):275–80.CrossRefPubMed
34.
Sundquist J, Johansson SE. Self reported poor health and low educational level predictors for mortality: a population based follow up study of 39,156 people in Sweden. J Epidemiol Community Health. 1997;51(1):35–40.PubMedCentralCrossRefPubMed
35.
Molarius A, Berglund K, Eriksson C, Lambe M, Nordstrom E, Eriksson HG, et al. Socioeconomic conditions, lifestyle factors, and self-rated health among men and women in Sweden. Eur J Pub Health. 2007;17(2):125–33.CrossRef
36.
Modell V, Knaus M, Modell F, Roifman C, Orange J, Notarangelo LD. Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery. Immunol Res. 2014;60(1):132–44.CrossRefPubMed
37.
Bousfiha AA, Jeddane L, Ailal F, Benhsaien I, Mahlaoui N, Casanova JL, et al. Primary immunodeficiency diseases worldwide: more common than generally thought. J Clin Immunol. 2013;33(1):1–7.CrossRefPubMed
38.
Darviri C, Artemiadis AK, Tigani X, Alexopoulos EC. Lifestyle and self-rated health: a cross-sectional study of 3,601 citizens of Athens, Greece. BMC Pubic Health. 2011;11:619.CrossRef
39.
Chan YY, Teh CH, Lim KK, Lim KH, Yeo PS, Kee CC, et al. Lifestyle, chronic diseases and self-rated health among Malaysian adults: results from the 2011 National Health and Morbidity Survey (NHMS). BMC Public Health. 2015;15(1):754.PubMedCentralCrossRefPubMed
40.
Heistaro S, Jousilahti P, Lahelma E, Vartiainen E, Puska P. Self rated health and mortality: a long term prospective study in eastern Finland. J Epidemiol Community Health. 2001;55(4):227–32.PubMedCentralCrossRefPubMed
41.
Dowd JB, Zajacova A. Does the predictive power of self-rated health for subsequent mortality risk vary by socioeconomic status in the US? Int J Epidemiol. 2007;36(6):1214–21.CrossRefPubMed
42.
Whitehead M, Drever F, Doran T. Is the health of the long-term unemployed better or worse in high unemployment areas? Health Stat Q / Off Nat Stat. 2005;25:12–7.
43.
Delpierre C, Lauwers-Cances V, Datta GD, Lang T, Berkman L. Using self-rated health for analysing social inequalities in health: a risk for underestimating the gap between socioeconomic groups? J Epidemiol Community Health. 2009;63(6):426–32.CrossRefPubMed
44.
Hillen T, Schaub R, Hiestermann A, Kirschner W, Robra BP. Self rating of health is associated with stressful life events, social support and residency in East and West Berlin shortly after the fall of the wall. J Epidemiol Community Health. 2000;54(8):575–80.PubMedCentralCrossRefPubMed
45.
Ware Jr JE, Bayliss MS, Mannocchia M, Davis GL. Health-related quality of life in chronic hepatitis C: impact of disease and treatment response. Int Ther Group Hepatol. 1999;30(2):550–5.
46.
Westaway MS. The impact of chronic diseases on the health and well-being of South Africans in early and later old age. Arch Gerontol Geriatr. 2010;50(2):213–21.CrossRefPubMed
47.
Latham K, Peek CW. Self-rated health and morbidity onset among late midlife U.S. adults. J Gerontol Ser B Psychol Sci Soc Sci. 2013;68(1):107–16.CrossRef
48.
Sprangers MA, de Regt EB, Andries F, van Agt HM, Bijl RV, de Boer JB, et al. Which chronic conditions are associated with better or poorer quality of life? J Clin Epidemiol. 2000;53(9):895–907.CrossRefPubMed
49.
Molarius A, Janson S. Self-rated health, chronic diseases, and symptoms among middle-aged and elderly men and women. J Clin Epidemiol. 2002;55(4):364–70.CrossRefPubMed
50.
Li CL, Chang HY, Wang HH, Bai YB. Diabetes, functional ability, and self-rated health independently predict hospital admission within 1 year among older adults: a population based cohort study. Arch Gerontol Geriatr. 2011;52(2):147–52.CrossRefPubMed
51.
Halford C, Wallman T, Welin L, Rosengren A, Bardel A, Johansson S, et al. Effects of self-rated health on sick leave, disability pension, hospital admissions and mortality. A population-based longitudinal study of nearly 15,000 observations among Swedish women and men. BMC Public Health. 2012;12:1103.PubMedCentralCrossRefPubMed
52.
Manor O, Matthews S, Power C. Self-rated health and limiting longstanding illness: inter-relationships with morbidity in early adulthood. Int J Epidemiol. 2001;30(3):600–7.CrossRefPubMed
53.
Chen Y, While AE, Hicks A. Self-rated health and associated factors among older people living alone in Shanghai. Geriatr Gerontolo Int. 2014 Apr 21.
54.
Bailis DS, Segall A, Chipperfield JG. Two views of self-rated general health status. Soc Sci Med. 2003;56(2):203–17.CrossRefPubMed
55.
Meng Q, Xie Z, Zhang T. A single-item self-rated health measure correlates with objective health status in the elderly: a survey in suburban beijing. Front Public Health. 2014;2:27.PubMedCentralCrossRefPubMed
56.
57.
Foottit J, Anderson D. Associations between perception of wellness and health-related quality of life, comorbidities, modifiable lifestyle factors and demographics in older Australians. Aust J Ageing. 2012;31(1):22–7.CrossRef
58.
Benyamini Y, Blumstein T, Murad H, Lerner-Geva L. Changes over time from baseline poor self-rated health: for whom does poor self-rated health not predict mortality? Psychol Health. 2011;26(11):1446–62.CrossRefPubMed
59.
Fylkesnes K, Forde OH. The tromso study: predictors of self-evaluated health−has society adopted the expanded health concept? Soc Sci Med. 1991;32(2):141–6.CrossRefPubMed
60.
Onadja Y, Bignami S, Rossier C, Zunzunegui MV. The components of self-rated health among adults in Ouagadougou. Burkina Faso Popul Health Metrics. 2013;11:15.CrossRef
61.
Bize R, Johnson JA, Plotnikoff RC. Physical activity level and health-related quality of life in the general adult population: a systematic review. Prev Med. 2007;45(6):401–15.CrossRefPubMed
62.
Sargent-Cox K, Cherbuin N, Morris L, Butterworth P, Anstey KJ. The effect of health behavior change on self-rated health across the adult life course: a longitudinal cohort study. Prev Med. 2014;58:75–80.CrossRefPubMed
63.
Dickerson JB, Smith ML, Ahn S, Ory MG. Associations between health care factors and self-reported health status among individuals with diabetes: results from a community assessment. J Community Health. 2011;36(2):332–41.CrossRefPubMed
64.
Shi L, Starfield B, Politzer R, Regan J. Primary care, self-rated health, and reductions in social disparities in health. Health Serv Res. 2002;37(3):529–50.PubMedCentralCrossRefPubMed
65.
Gardulf A, Bjorvell H, Gustafson R, Hammarstrom L, Smith CI. The life situations of patients with primary antibody deficiency untreated or treated with subcutaneous gammaglobulin infusions. Clin Exp Immunol. 1993;92(2):200–4.PubMedCentralCrossRefPubMed
66.
Gardulf A, Nicolay U. Replacement IgG therapy and self-therapy at home improve the health-related quality of life in patients with primary antibody deficiencies. Curr Opin Allergy Clin Immunol. 2006;6(6):434–42.CrossRefPubMed
67.
Winkelstein JA, Conley ME, James C, Howard V, Boyle J. Adults with X-linked agammaglobulinemia: impact of disease on daily lives, quality of life, educational and socioeconomic status, knowledge of inheritance, and reproductive attitudes. Medicine. 2008;87(5):253–8.PubMedCentralCrossRefPubMed
68.
Zebracki K, Palermo TM, Hostoffer R, Duff K, Drotar D. Health-related quality of life of children with primary immunodeficiency disease: a comparison study. Ann Allergy, Asthma Immunol: Off Publ Am Coll Allergy, Asthma Immunol. 2004;93(6):557–61.CrossRef
69.
Quinti I, Di Pietro C, Martini H, Pesce AM, Lombardi F, Baumghartner M, et al. Health related quality of life in common variable immunodeficiency. Yonsei Med J. 2012;53(3):603–10.PubMedCentralCrossRefPubMed
70.
71.
Ruthig JC, Hanson BL, Pedersen H, Weber A, Chipperfield JG. Later life health optimism, pessimism and realism: psychosocial contributors and health correlates. Psychol Health. 2011;26(7):835–53.CrossRefPubMed
72.
Sullivan M. The new subjective medicine: taking the patient’s point of view on health care and health. Soc Sci Med. 2003;56(7):1595–604.CrossRefPubMed
Metadata
Title
Perceived Health in Patients with Primary Immune Deficiency
Authors
Filiz Odabasi Seeborg
Roann Seay
Marcia Boyle
John Boyle
Christopher Scalchunes
Jordan Scott Orange
Publication date
01-10-2015
Publisher
Springer US
Published in
Journal of Clinical Immunology / Issue 7/2015
Print ISSN: 0271-9142
Electronic ISSN: 1573-2592
DOI
https://doi.org/10.1007/s10875-015-0196-7

Other articles of this Issue 7/2015

Journal of Clinical Immunology 7/2015 Go to the issue

Original Research

Use of Polyclonal Intravenous Immunoglobulin at a Paediatric Referral Hospital in South Africa Between 2009 and 2012

CME Review

The Ying and Yang of STAT3 in Human Disease

Original Research

Primary Immunodeficiency Diseases in Saudi Arabia: a Tertiary Care Hospital Experience over a Period of Three Years (2010–2013)

Original Article

Investigation of Skin Barrier Functions and Allergic Sensitization in Patients with Hyper-IgE Syndrome

Astute Clinician Report

Astute Clinician Report: A Novel 10 bp Frameshift Deletion in Exon 2 of ICOS Causes a Combined Immunodeficiency Associated with an Enteritis and Hepatitis

Original Article

Janus Kinase Inhibitor Tofacitinib Shows Potent Efficacy in a Mouse Model of Autoimmune Lymphoproliferative Syndrome (ALPS)

ACC 2024 Congress Coverage

Heart Failure Video

Year in Review: Heart failure and cardiomyopathies

Watch now

Watch this official video from ACC.24. Dr. Biykem Bozkurt discuss last year's major advances in heart failure and cardiomyopathies.

Semaglutide benefits people with type 2 diabetes and obesity-related heart failure

16-04-2024 Type 2 Diabetes News

Incentivised to exercise

11-04-2024 Lifestyle Modifications News

New intervention for STEMI-related cardiogenic shock

10-04-2024 Myocardial Infarction News

» View more highlights on the ACC 2024 congress hub page

Image Credits