Skip to main content
Top
Published in: Journal of Clinical Immunology 3/2024

Open Access 01-03-2024 | Primary Immunodeficiency | Research

Psychosocial Evaluation of Adults with Primary Immunodeficiency

Authors: Reyhan Gumusburun, Sevgi Altay, Hasancan Cengiz, Gulendam Hakverdioglu Yont, Ozlem Kuman Tuncel, Omur Ardeniz

Published in: Journal of Clinical Immunology | Issue 3/2024

Login to get access

Abstract

Purpose

Primary immunodeficiency disorder (PID) is a heterogeneous group of diseases characterized by immune dysregulation and increased susceptibility to infections, with various cognitive, emotional, behavioral, and social effects on patients. This study aimed to evaluate loneliness, social adaptation, anxiety, and depression and to identify associated factors in adults with immunodeficiency.

Methods

A cross-sectional study in Turkey (Feb-Aug 2022) obtained sociodemographic data from patient records. The Social Adaptation Self-Evaluation Scale (SASS), UCLA-Loneliness Scale (UCLA-LS), and Hospital Anxiety and Depression Scale (HADS) were administered in individual patient interviews. HADS-Anxiety (HADS-A) and HADS-Depression (HADS-D) scores were assessed using cut-offs of 10 and 7, respectively; SASS cut-offs for social imbalance and normalcy were < 25 and > 35, respectively.

Results

A total of 104 patients (60 women, 44 men) with a median age of 34 years (range: 18–89) were included in the study. Mean scores were SASS: 34.46 ± 8.11, UCLA-LS: 44.89 ± 12.66, HADS-A: 9.87 ± 4.77, and HADS-D: 9.12 ± 4.80. SASS score was negatively correlated with HADS-A, HADS-D, and UCLA-LS scores. There were positive correlations between UCLA-LS and HADS-A (r = -0.355, p < 0.01) and HADS-D (r = -0.614, p < 0.01) and between HADS-A and HADS-D (r = -0.454, p < 0.01). Low-income level was associated with higher HADS-A, HADS-D, and UCLA-LS scores and lower SASS score (p = 0.012, p = 0.041, p = 0.008, and p = 0.001, respectively).

Conclusion

Adults with PID are at risk for depression and experience high levels of loneliness. Social maladjustment and loneliness contribute to anxiety and depression, and loneliness is correlated with impaired social functioning. These findings emphasize the importance of biopsychosocial evaluation of individuals diagnosed with PID.
Literature
2.
go back to reference Isung J, Williams K, Isomura K, Gromark C, Hesselmark E, Lichtenstein P, Larsson H, Fernández de la Cruz L, Sidorchuk A, Mataix-Cols D. Association of primary humoral immunodeficiencies with psychiatric disorders and suicidal behavior and the role of autoimmune diseases. JAMA Psych. 2020;77(11):1147–1154. https://doi.org/10.1001/jamapsychiatry.2020.1260 Isung J, Williams K, Isomura K, Gromark C, Hesselmark E, Lichtenstein P, Larsson H, Fernández de la Cruz L, Sidorchuk A, Mataix-Cols D. Association of primary humoral immunodeficiencies with psychiatric disorders and suicidal behavior and the role of autoimmune diseases. JAMA Psych. 2020;77(11):1147–1154. https://​doi.​org/​10.​1001/​jamapsychiatry.​2020.​1260
3.
6.
go back to reference Saris IMJ, Aghajani M, van der Werff SJA, van der Wee NJA, Penninx BWJH. Social functioning in patients with depressive and anxiety disorders. Acta Psychiatr Scand [Internet]. Acta Psychiatr Scand; 2017 [cited 2023 Jul 26];136:352–61. Available from: https://pubmed.ncbi.nlm.nih.gov/28767127/ Saris IMJ, Aghajani M, van der Werff SJA, van der Wee NJA, Penninx BWJH. Social functioning in patients with depressive and anxiety disorders. Acta Psychiatr Scand [Internet]. Acta Psychiatr Scand; 2017 [cited 2023 Jul 26];136:352–61. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​28767127/​
7.
go back to reference Ikhtabi S, Pitman A, Toh G, Birken M, Pearce E, Johnson S. The experience of loneliness among people with a “personality disorder” diagnosis or traits: a qualitative meta-synthesis. BMC Psychiatry [Internet]. BioMed Central Ltd; 2022 [cited 2024 Jan 21];22:1–17. Available from: https://bmcpsychiatry.biomedcentral.com/articles/https://doi.org/10.1186/s12888-022-03767-9 Ikhtabi S, Pitman A, Toh G, Birken M, Pearce E, Johnson S. The experience of loneliness among people with a “personality disorder” diagnosis or traits: a qualitative meta-synthesis. BMC Psychiatry [Internet]. BioMed Central Ltd; 2022 [cited 2024 Jan 21];22:1–17. Available from: https://​bmcpsychiatry.​biomedcentral.​com/​articles/​https://​doi.​org/​10.​1186/​s12888-022-03767-9
8.
go back to reference Mushtaq R, Shoib S, Shah T, Mushtaq S. Relationship between loneliness, psychiatric disorders and physical health ? A review on the psychological aspects of loneliness. J Clin Diagn Res [Internet]. J Clin Diagn Res; 2014 [cited 2023 Jul 26];8:WE01–4. Available from: https://pubmed.ncbi.nlm.nih.gov/25386507/ Mushtaq R, Shoib S, Shah T, Mushtaq S. Relationship between loneliness, psychiatric disorders and physical health ? A review on the psychological aspects of loneliness. J Clin Diagn Res [Internet]. J Clin Diagn Res; 2014 [cited 2023 Jul 26];8:WE01–4. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​25386507/​
10.
go back to reference Kuburovic NB, Pasic S, Susic G, Stevanovic D, Kuburovic V, Zdravkovic S, et al. Health-related quality of life, anxiety, and depressive symptoms in children with primary immunodeficiencies. Patient Prefer Adherence [Internet]. Patient Prefer Adherence; 2014 [cited 2023 Jul 26];8:323–30. Available from: https://pubmed.ncbi.nlm.nih.gov/24669189/ Kuburovic NB, Pasic S, Susic G, Stevanovic D, Kuburovic V, Zdravkovic S, et al. Health-related quality of life, anxiety, and depressive symptoms in children with primary immunodeficiencies. Patient Prefer Adherence [Internet]. Patient Prefer Adherence; 2014 [cited 2023 Jul 26];8:323–30. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​24669189/​
11.
go back to reference 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 [Internet]. Front Immunol; 2014 [cited 2023 Jul 26];5. Available from: https://pubmed.ncbi.nlm.nih.gov/25505470/ 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 [Internet]. Front Immunol; 2014 [cited 2023 Jul 26];5. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​25505470/​
12.
go back to reference Cacioppo JT, Hawkley LC, Thisted RA. Perceived social isolation makes me sad: 5-year cross-lagged analyses of loneliness and depressive symptomatology in the Chicago Health, Aging, and Social Relations Study. Psychol Aging [Internet]. Psychol Aging; 2010 [cited 2023 Jul 26];25:453–63. Available from: https://pubmed.ncbi.nlm.nih.gov/20545429/ Cacioppo JT, Hawkley LC, Thisted RA. Perceived social isolation makes me sad: 5-year cross-lagged analyses of loneliness and depressive symptomatology in the Chicago Health, Aging, and Social Relations Study. Psychol Aging [Internet]. Psychol Aging; 2010 [cited 2023 Jul 26];25:453–63. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​20545429/​
13.
go back to reference Zhang Y, Kuang J, Xin Z, Fang J, Song R, Yang Y, et al. Loneliness, social isolation, depression and anxiety among the elderly in Shanghai: Findings from a longitudinal study. Arch Gerontol Geriatr [Internet]. Arch Gerontol Geriatr; 2023 [cited 2023 Jul 26];110. Available from: https://pubmed.ncbi.nlm.nih.gov/36863166/ Zhang Y, Kuang J, Xin Z, Fang J, Song R, Yang Y, et al. Loneliness, social isolation, depression and anxiety among the elderly in Shanghai: Findings from a longitudinal study. Arch Gerontol Geriatr [Internet]. Arch Gerontol Geriatr; 2023 [cited 2023 Jul 26];110. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​36863166/​
15.
go back to reference Baris S, Abolhassani H, Massaad MJ, Al-Nesf M, Chavoshzadeh Z, Keles S, et al. The Middle East and North Africa Diagnosis and Management Guidelines for Inborn Errors of Immunity. J allergy Clin Immunol Pract [Internet]. J Allergy Clin Immunol Pract; 2023 [cited 2023 Jul 26];11:158–180.e11. Available from: https://pubmed.ncbi.nlm.nih.gov/36265766/ Baris S, Abolhassani H, Massaad MJ, Al-Nesf M, Chavoshzadeh Z, Keles S, et al. The Middle East and North Africa Diagnosis and Management Guidelines for Inborn Errors of Immunity. J allergy Clin Immunol Pract [Internet]. J Allergy Clin Immunol Pract; 2023 [cited 2023 Jul 26];11:158–180.e11. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​36265766/​
16.
go back to reference Bonilla FA, Khan DA, Ballas ZK, Chinen J, Frank MM, Hsu JT, et al. Practice parameter for the diagnosis and management of primary immunodeficiency. J Allergy Clin Immunol [Internet]. J Allergy Clin Immunol; 2015 [cited 2023 Jul 26];136:1186–1205.e78. Available from: https://pubmed.ncbi.nlm.nih.gov/26371839/ Bonilla FA, Khan DA, Ballas ZK, Chinen J, Frank MM, Hsu JT, et al. Practice parameter for the diagnosis and management of primary immunodeficiency. J Allergy Clin Immunol [Internet]. J Allergy Clin Immunol; 2015 [cited 2023 Jul 26];136:1186–1205.e78. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​26371839/​
17.
go back to reference Akkaya C, Sarandöl A, Esen Danaci A, Sivrioğlu EY, Kaya E, Kirli S. Reliability and validity of the Turkish version of the Social Adaptation Self-Evaluation Scale (SASS). Turkish J Psychiatry. 2008;19:292–9. Akkaya C, Sarandöl A, Esen Danaci A, Sivrioğlu EY, Kaya E, Kirli S. Reliability and validity of the Turkish version of the Social Adaptation Self-Evaluation Scale (SASS). Turkish J Psychiatry. 2008;19:292–9.
18.
go back to reference Aydemir Ö, Güvenir T, Küey L, Kültür S. Validity and reliability of the Turkish version of Hospital anxiety and depression scale. Turkish J Psychol. 1997;8:280–7. Aydemir Ö, Güvenir T, Küey L, Kültür S. Validity and reliability of the Turkish version of Hospital anxiety and depression scale. Turkish J Psychol. 1997;8:280–7.
19.
go back to reference Demir A. The validity and reliability of the UCLA loneliness scale. Turkish Journal of Psychology. Turkish J Psychol. 1989;7:4–18. Demir A. The validity and reliability of the UCLA loneliness scale. Turkish Journal of Psychology. Turkish J Psychol. 1989;7:4–18.
20.
go back to reference Yeşillik S, Demirel F. Anxiety and Depression Among Patients with Predominantly Antibody Deficiencies and the Importance of Early Diagnosis. Asthma Allergy Immunol. 2021;19:64–70.CrossRef Yeşillik S, Demirel F. Anxiety and Depression Among Patients with Predominantly Antibody Deficiencies and the Importance of Early Diagnosis. Asthma Allergy Immunol. 2021;19:64–70.CrossRef
21.
go back to reference Kayan Ocakoglu B, Karaca NE, Ocakoglu FT, Erermis S. Psychological burden of pediatric primary immunodeficiency. Pediatr Int Blackwell Publishing. 2018;60:911–7.CrossRef Kayan Ocakoglu B, Karaca NE, Ocakoglu FT, Erermis S. Psychological burden of pediatric primary immunodeficiency. Pediatr Int Blackwell Publishing. 2018;60:911–7.CrossRef
22.
go back to reference Binbay T, Direk N, Aker T, Akvardar Y, Alptekin K, Cimilli C, Cam B, Deveci A, Kadri Gültekin B, Sar V, Taycan O, Ulaş H. Psychiatric epidemiology in Turkey: main advances in recent studies and future directions. Turk Psikiyatri Derg. 2014;25(4):264–81 Binbay T, Direk N, Aker T, Akvardar Y, Alptekin K, Cimilli C, Cam B, Deveci A, Kadri Gültekin B, Sar V, Taycan O, Ulaş H. Psychiatric epidemiology in Turkey: main advances in recent studies and future directions. Turk Psikiyatri Derg. 2014;25(4):264–81
24.
go back to reference Abolhassani H, Sadaghiani MS, Aghamohammadi A, Ochs HD, Rezaei N. Home-based subcutaneous immunoglobulin versus hospital-based intravenous immunoglobulin in treatment of primary antibody deficiencies: systematic review and meta analysis. J Clin Immunol [Internet]. J Clin Immunol; 2012 [cited 2023 Jul 26];32:1180–92. Available from: https://pubmed.ncbi.nlm.nih.gov/22730009/ Abolhassani H, Sadaghiani MS, Aghamohammadi A, Ochs HD, Rezaei N. Home-based subcutaneous immunoglobulin versus hospital-based intravenous immunoglobulin in treatment of primary antibody deficiencies: systematic review and meta analysis. J Clin Immunol [Internet]. J Clin Immunol; 2012 [cited 2023 Jul 26];32:1180–92. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​22730009/​
26.
go back to reference Heath J, Lehman E, Saunders EFH, Craig T. Anxiety and depression in adults with primary immunodeficiency: How much do these patients experience and how much do they attribute to their primary immunodeficiency? Allergy asthma Proc [Internet]. Allergy Asthma Proc; 2016 [cited 2023 Jul 26];37:409–15. Available from: https://pubmed.ncbi.nlm.nih.gov/27657526/ Heath J, Lehman E, Saunders EFH, Craig T. Anxiety and depression in adults with primary immunodeficiency: How much do these patients experience and how much do they attribute to their primary immunodeficiency? Allergy asthma Proc [Internet]. Allergy Asthma Proc; 2016 [cited 2023 Jul 26];37:409–15. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​27657526/​
27.
go back to reference Franco-O´Byrne D, Gonzalez-Gomez R, Morales Sepúlveda JP, Vergara M, Ibañez A, Huepe D. The impact of loneliness and social adaptation on depressive symptoms: Behavioral and brain measures evidence from a brain health perspective. Front Psychol [Internet]. Front Psychol; 2023 [cited 2023 Jul 26];14. Available from: https://pubmed.ncbi.nlm.nih.gov/37077845/ Franco-O´Byrne D, Gonzalez-Gomez R, Morales Sepúlveda JP, Vergara M, Ibañez A, Huepe D. The impact of loneliness and social adaptation on depressive symptoms: Behavioral and brain measures evidence from a brain health perspective. Front Psychol [Internet]. Front Psychol; 2023 [cited 2023 Jul 26];14. Available from: https://​pubmed.​ncbi.​nlm.​nih.​gov/​37077845/​
Metadata
Title
Psychosocial Evaluation of Adults with Primary Immunodeficiency
Authors
Reyhan Gumusburun
Sevgi Altay
Hasancan Cengiz
Gulendam Hakverdioglu Yont
Ozlem Kuman Tuncel
Omur Ardeniz
Publication date
01-03-2024
Publisher
Springer US
Published in
Journal of Clinical Immunology / Issue 3/2024
Print ISSN: 0271-9142
Electronic ISSN: 1573-2592
DOI
https://doi.org/10.1007/s10875-024-01671-3

Other articles of this Issue 3/2024

Journal of Clinical Immunology 3/2024 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

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