Implications for advanced practice nurses when pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is suspected: a qualitative study

McClelland, Molly; Crombez, Mary-Margaret; Crombez, Catherine; Wenz, Catherine; Lisius, Margaret; Mattia, Amanda; Marku, Suzana

doi:10.1016/j.pedhc.2015.03.005

Cited by 12Streptococcal Infections and TreatmentsChild and Adolescent HealthNursing Roles and Practices

Implications for advanced practice nurses when pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is suspected: a qualitative study

Open access

McClelland, Molly, Crombez, Mary-Margaret, Crombez, Catherine, Wenz, Catherine, Lisius, Margaret, Mattia, Amanda, Marku, Suzana·2015·Journal of Pediatric Health Care

DOI 10.1016/j.pedhc.2015.03.005

Open this paper in CoChat — free account Open PDF

Abstract

Introduction Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is a relatively new but controversial diagnosis affecting hundreds of children and their families. It is generally thought to be an autoimmune disorder resulting from a streptococcal infection that causes significant and bizarre behavioral changes in children. Currently no definitive diagnostic or treatment modalities exist, which has led to misdiagnoses, ineffective treatments, and delayed care.Methods A qualitative study was conducted that included 60 families with at least one child diagnosed with PANDAS. The purpose was to explore how families experience the disorder and what nurses can do to provide effective care.Results Using paradigmatic analysis of transcribed interviews, three themes were identified: fear, frustration, and not being heard.Discussion Results from this study suggest that more information is needed to better understand this challenging phenomenon from both medical and nursing perspectives. The study also reaffirms the importance of practicing the art of nursing, especially when the science is not yet established.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

Integrity signals

Registry

Crossref · 10.1016/j.pedhc.2015.03.005

Cites

41 of 41 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

A 2015 qualitative study of 60 families found 3 themes: fear, frustration, and feelings of not being heard by physicians.
“A qualitative study was conducted in 2015 to explore how 60 families experienced IAE affecting their child, and 3 themes that emerged among them included fear, frustration, and feelings of not being heard by their physicians.53”
From An updated review of pediatric autoimmune neuropsychiatric disorders associated with Streptococcus/pediatric acute-onset neuropsychiatric syndrome, also known as idiopathic autoimmune encephalitis: What the allergist should know (2023) · cites this paper as [53]

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Narrative configuration in qualitative analysis
Polkinghorne, D. E. (1995) · International Journal of Qualitative Studies in Education · doi:10.1080/0951839950080103 · Cited by 3,958 · see citing works
Understanding and Evaluating Qualitative Research
Fossey, E., Harvey, C., Mcdermott, F., & Davidson, L. (2002) · Australian & New Zealand Journal of Psychiatry · doi:10.1046/j.1440-1614.2002.01100.x · Cited by 2,311 · see citing works
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases
Swedo, S. E., Leonard, H. L., Garvey, M., Mittleman, B., Allen, A. J., Perlmutter, S., Dow, S., Zamkoff, J., Dubbert, B. K., & Lougee, L. (1998) · American Journal of Psychiatry · doi:10.1176/ajp.155.2.264 · Cited by 1,534 · see citing works
Life history and narrative
Hatch, J. A., & Wisniewski, R. (1995) · International Journal of Qualitative Studies in Education · doi:10.1080/0951839950080102 · Cited by 845 · see citing works
Research methods in health: foundations for evidence-based practice
Scallan, S. (2017) · Education for Primary Care · doi:10.1080/14739879.2017.1344108 · Cited by 621 · see citing works
From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)
Swedo, S. E. (2012) · Pediatrics & Therapeutics · doi:10.4172/2161-0665.1000113 · Cited by 423 · see citing works
Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference
Chang, K., Frankovich, J., Cooperstock, M., Cunningham, M. W., Latimer, M. E., Murphy, T. K., Pasternack, M., Thienemann, M., Williams, K., Walter, J., et al. (2015) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0084 · Cited by 359 · see citing works
Association Between Streptococcal Infection and Obsessive-Compulsive Disorder, Tourette's Syndrome, and Tic Disorder
Mell, L. K., Davis, R. L., & Owens, D. (2005) · PEDIATRICS · doi:10.1542/peds.2004-2058 · Cited by 232 · see citing works
Research Methods in Health: Foundations for Evidence-based Practice
Liamputtong, P. (2017) · Medical Entomology and Zoology · Cited by 217 · see citing works
Serum autoantibodies do not differentiate PANDAS and Tourette syndrome from controls
Singer, H. S., Hong, J. J., Yoon, D. Y., & Williams, P. N. (2005) · Neurology · doi:10.1212/01.wnl.0000183223.69946.f1 · Cited by 156 · see citing works
The design of compassionate care
Crawford, P., Brown, B. J., Kvangarsnes, M., & Gilbert, P. (2014) · Journal of Clinical Nursing · doi:10.1111/jocn.12632 · Cited by 155 · see citing works
Clinical factors associated with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections
Murphy, T. K., Storch, E. A., Lewin, A. B., Edge, P. J., & Goodman, W. K. (2012) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2011.07.012 · Cited by 138 · see citing works
Moving from PANDAS to CANS
Singer, H. S., Gilbert, D. L., Wolf, D. S., Mink, J. W., & Kurlan, R. (2011) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2011.11.040 · Cited by 116 · see citing works
Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype
Murphy, T. K., Patel, P. D., McGuire, J. F., Kennel, A., Mutch, P. J., Parker-Athill, E. C., Hanks, C. E., Lewin, A. B., Storch, E. A., Toufexis, M. D., et al. (2015) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0062 · Cited by 110 · see citing works
The differential diagnosis of chorea
Wild, E. J., & Tabrizi, S. J. (2007) · Practical Neurology · doi:10.1136/pn.2007.134585 · Cited by 107 · see citing works
Streptococcal infection, Tourette syndrome, and OCD
Schrag, A. E., Gilbert, R. E., Giovannoni, G., Robertson, M. M., Metcalfe, C. D., & Ben‐Shlomo, Y. (2009) · Neurology · doi:10.1212/wnl.0b013e3181bd10fd · Cited by 92 · see citing works
Lack of Effect of Intravenous Immunoglobulins on Tics
Hoekstra, P. J., Minderaa, R. B., & Kallenberg, C. G. M. (2004) · The Journal of Clinical Psychiatry · doi:10.4088/jcp.v65n0413 · Cited by 64 · see citing works
Therapeutic Plasma Apheresis as a Treatment for 35 Severely Ill Children and Adolescents with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
Latimer, M. E., L’Etoile, N., Seidlitz, J., & Swedo, S. E. (2015) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0080 · Cited by 63 · see citing works
Conducting qualitative longitudinal research using interpretative phenomenological analysis
Snelgrove, S. R. (2014) · Nurse Researcher · doi:10.7748/nr.22.1.20.e1277 · Cited by 62 · see citing works
Five Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome of Differing Etiologies
Frankovich, J., Thienemann, M., Rana, S., & Chang, K. (2015) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0056 · Cited by 62 · see citing works
Anti-streptococcal, tubulin, and dopamine receptor 2 antibodies in children with PANDAS and Tourette syndrome: Single-point and longitudinal assessments
Morris‐Berry, C., Pollard, M., Gao, S., Thompson, C. B., & Singer, H. S. (2013) · Journal of Neuroimmunology · doi:10.1016/j.jneuroim.2013.09.010 · Cited by 59 · see citing works
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): An Evolving Concept
Macerollo, A., & Martino, D. (2013) · Tremor and Other Hyperkinetic Movements · doi:10.5334/tohm.167 · Cited by 56 · see citing works
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): An Evolving Concept
Macerollo, A., & Martino, D. (2013) · Europe PMC (PubMed Central) · doi:10.7916/d8zc81m1 · Cited by 53 · see citing works
Pharmacokinetics and tolerability of a new intravenous immunoglobulin preparation, IGIV‐C, 10% (Gamunex™, 10%)
Ballow, M. C., Berger, M., Bonilla, F. A., Buckley, R. H., Cunningham‐Rundles, C., Fireman, P., Kaliner, M., Ochs, H. D., Skoda‐Smith, S., Sweetser, M. T., et al. (2003) · Vox Sanguinis · doi:10.1046/j.1423-0410.2003.00286.x · Cited by 51 · see citing works
Cefdinir for Recent-Onset Pediatric Neuropsychiatric Disorders: A Pilot Randomized Trial
Murphy, T. K., Parker-Athill, E. C., Lewin, A. B., Storch, E. A., & Mutch, P. J. (2014) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0010 · Cited by 51 · see citing works
Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
Kovacevic, M., Grant, P., & Swedo, S. E. (2015) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2014.0067 · Cited by 47 · see citing works
A Comparison of Two Types of Social Support for Mothers of Mentally Ill Children
Schärer, K., Colon, E. J., Moneyham, L. L., Hussey, J., Tavakoli, A. S., & Shugart, M. A. (2009) · Journal of Child and Adolescent Psychiatric Nursing · doi:10.1111/j.1744-6171.2009.00177.x · Cited by 44 · see citing works
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: an overview
Esposito, S., Bianchini, S., Baggi, E., Fattizzo, M., & Rigante, D. (2014) · European Journal of Clinical Microbiology & Infectious Diseases · doi:10.1007/s10096-014-2185-9 · Cited by 37 · see citing works
The experience of critically ill children: A phenomenological study of discomfort and comfort.
Carnevale, F. A., & Gaudreault, J. (2013) · PubMed · Cited by 34 · see citing works
Pediatric inflammatory brain diseases
Mater, H. V. (2014) · Current Opinion in Rheumatology · doi:10.1097/bor.0000000000000092 · Cited by 32 · see citing works
Anxiety and uncertainty in Korean mothers of children with febrile convulsion: cross‐sectional survey
Ju, H. O., McElmurry, B. J., Park, C. G., McCreary, L. L., Kim, M., & Kim, E. J. (2011) · Journal of Clinical Nursing · doi:10.1111/j.1365-2702.2010.03496.x · Cited by 29 · see citing works
Lyme disease and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): an overview
Rhee, H., & Cameron, D. J. (2012) · International Journal of General Medicine · doi:10.2147/ijgm.s24212 · Cited by 16 · see citing works
A case of PANDAS with Kleine–Levin type periodic hypersomnia
Das, A., & Radhakrishnan, A. (2012) · Sleep Medicine · doi:10.1016/j.sleep.2011.11.003 · Cited by 16 · see citing works
PANDAS and anorexia nervosa—a spotters' guide: Suggestions for medical assessment
Vincenzi, B., O’Toole, J., & Lask, B. D. (2010) · European Eating Disorders Review · doi:10.1002/erv.977 · Cited by 16 · see citing works
[Therapeutic response to plasmapheresis in four cases with obsessive-compulsive disorder and tic disorder triggered by streptococcal infections].
Beşiroğlu, L., Ağargün, M. Y., Ozbebit, O., Sözen, M., Dılek, İ., & Güleç, M. (2007) · PubMed · Cited by 11 · see citing works
Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections
Daniel Geller, K. W., & Shorsher, L. G. (2018) · The SAGE Encyclopedia of Intellectual and Developmental Disorders · doi:10.4135/9781483392271.n374 · Cited by 10 · see citing works
A Case Report of Obsessive-Compulsive Disorder Following Acute Disseminated Encephalomyelitis
Muir, K. E., McKenney, K. S., Connolly, M. B., & Stewart, S. E. (2013) · PEDIATRICS · doi:10.1542/peds.2012-2876 · Cited by 9 · see citing works
Periodic Fever and Hyperimmunoglobulin D Syndrome in a Boy with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Group A β-Hemolytic Streptococcus
Ray, P. Ç., Arslan, D., Çelik, G. G., Tahiroğlu, A. Y., Avcı, A., & Erken, E. (2013) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2012.0129 · Cited by 6 · see citing works
A new clinical feature associated with familial early-onset of dystonic-guttural tics: An unusual diagnosis of PANDAS
Vitaliti, G., Trifiletti, R. R., Falsaperla, R., Parano, E., Spalice, A., & Pavone, P. (2014) · Journal of Pediatric Neurosciences · doi:10.4103/1817-1745.131497 · Cited by 3 · see citing works
PANDAS syndrome in the school setting.
O'Rourke, K. (2003) · PubMed · Cited by 3 · see citing works
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
fattani, M. O. A., Refaie, A. M. A., Alsulami, S. H., & Alhojaili, N. (2021) · Journal of Medical - Clinical Research & Reviews · doi:10.33425/2639-944x.1229 · Cited by 3 · see citing works

Flagged first, then by citations

1 of the 42 references couldn’t be matched to a known paper.

Research works printed but not linked: 1

[23]23. O'Connor, K. M., & Speros, C. L. (2008). PANDAS in primary care: A pediatric case study. pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. American Journal for Nurse Practitioners, 12(3), 21-31.

Sorted by citations

PANDAS/PANS in childhood: controversies and evidence
Wilbur, C., Bitnun, A., Kronenberg, S., Laxer, R. M., Levy, D. M., Logan, W. J., Shouldice, M., & Yeh, E. A. (2019) · Paediatrics & Child Health · doi:10.1093/pch/pxy145 · Cited by 86 · see citing works
Pediatric Autoimmune Neuropsychiatric Disorders Associated With Group A Streptococci: Etiopathology and Diagnostic Challenges
Hutanu, A., Reddy, L. N., Mathew, J., Avanthika, C., Jhaveri, S., & Tummala, N. (2022) · Cureus · doi:10.7759/cureus.27729 · Cited by 10 · see citing works
“Concerns and intense emotions of the family members whose children are diagnosed with this phenotype have received significant attention on social media and are well-documented in the news [8].”
Background
Understanding parental stress among parents of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) in Sweden
Ringer, N., & Roll‐Pettersson, L. (2022) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.1080/17482631.2022.2080906 · Cited by 9 · see citing works
“Similar to the study by McClelland et al. (2015), the current study has shown that parents felt that healthcare providers blamed them for their child’s symptoms, an experience that leads to negative emotions and increase stress in parents.”
BackgroundResultInfluential
An updated review of pediatric autoimmune neuropsychiatric disorders associated with Streptococcus/pediatric acute-onset neuropsychiatric syndrome, also known as idiopathic autoimmune encephalitis: What the allergist should know
Hardin, H., Shao, W., & Bernstein, J. A. (2023) · Annals of Allergy, Asthma & Immunology · doi:10.1016/j.anai.2023.08.022 · Cited by 7 · see citing works
Family Quality of Life When Raising a Child with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS)
Demchick, B. B., Ehler, J., Marramar, S., Mills, A., & Nuneviller, A. (2019) · Journal of Occupational Therapy Schools & Early Intervention · doi:10.1080/19411243.2019.1592052 · Cited by 7 · see citing works
“feeling of not being heard when going through the diagnostic process (McClelland et al., 2015).”
BackgroundInfluential
The PANDAS/PANS disorders. Is it time for more allergist-immunologists to get involved?
Bellanti, J. A. (2023) · Allergy and Asthma Proceedings · doi:10.2500/aap.2023.44.230029 · Cited by 4 · see citing works
Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of Children’s experiences in Sweden
Ringer, N., Benjaminson, C., & Bejnö, H. (2023) · Cogent Psychology · doi:10.1080/23311908.2023.2259745 · Cited by 2 · see citing works
“In another qualitative study, by McClelland et al. (2015), strong fear of symptoms was identified as a common theme among family members, including the behavioural, emotional and intellectual changes associated with the onset of symptoms.”
Background
Waking Up to a Child With Abrupt Personality Changes
Papachrisanthou, M. M., & Davis, R. L. (2015) · The Journal for Nurse Practitioners · doi:10.1016/j.nurpra.2015.07.018
Pediatric Bipolar Disorder: A Case Presentation and Discussion
Weeks, G., & Spratling, R. G. (2017) · Journal of Pediatric Health Care · doi:10.1016/j.pedhc.2017.09.001
PANDAS
Melerine, C., & Manfrin-Ledet, L. (2019) · Nursing · doi:10.1097/01.nurse.0000559921.99814.23
Neuropsychıatrıc dısorders assocıated wıth chıldhood ımmunologıc dysfunctıon
Korkmaz, Ş. G., & Keskin, G. (2023) · Innowacje w Pielęgniarstwie · doi:10.21784/iwp.2023.024
The Lived Experience and Psychosocial Impact of Caring for a Child with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): A Mixed Methods Systematic Review
Cuming, S., & Kangas, M. (2026) · Child Psychiatry & Human Development · doi:10.1007/s10578-026-02042-2

PANDAS
Melerine, C., & Manfrin-Ledet, L. (2019) · Nursing · doi:10.1097/01.nurse.0000559921.99814.23
Review of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections
Mullen, S. (2015) · Mental Health Clinician · doi:10.9740/mhc.2015.07.184 · Cited by 2 · see citing works
Improving Provider Awareness and Comfort in Caring for PANDAS in the Outpatient Setting
Brunger, C. L., Anderson, M., Lemley, S., Taylor, N., & Russell, J. L. (2026) · Journal of Doctoral Nursing Practice · doi:10.1891/jdnp-2025-0003
CE: PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection
Pabst, C., & Subasic, K. (2020) · AJN American Journal of Nursing · doi:10.1097/01.naj.0000694332.85367.d0 · Cited by 4 · see citing works
Quality of Life in Families With a Young Child With Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections (PANDAS)
Demchick, B. B., Ehler, J., & Mills, A. (2020) · American Journal of Occupational Therapy · doi:10.5014/ajot.2020.74s1-rp401b · Cited by 1 · see citing works

Authors: McClelland, M., Crombez, M.-M., Crombez, C., Wenz, C., Lisius, M., Mattia, A., & Marku, S.
Affiliations: Beaumont Health (US)
Madonna University (US)
University of Detroit Mercy (US)
Corresponding author: McClelland, Molly
ORCID: McClelland, Molly
Venue: Journal of Pediatric Health Care
Publisher: Elsevier BV
Published: 2015-09
Volume: 29
Issue: 5
Pages: 442-452
ISSN: 0891-5245 (ISSN-L)
DOI: 10.1016/j.pedhc.2015.03.005
OpenAlex: W1982821762
Cited by: 12
References: 42
Citations by year: 2026: 1 · 2023: 4 · 2022: 2 · 2019: 2 · 2018: 1 · 2017: 1 · 2015: 1
FWCI: 0.14
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations: Journal of Pediatric Health Care (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Streptococcal Infections and Treatments
Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
Health Sciences › Health Professions › General Health Professions › Nursing Roles and Practices
Keywords: PANDAS, pediatric autoimmune neuropsychiatric disorders, advanced practice nurses, family experiences, misdiagnosis, delayed care, nursing care, children
MeSH terms: Adolescent, Autoimmune Diseases, Child, Humans, Obsessive-Compulsive Disorder, Parents, Streptococcal Infections, Streptococcus pyogenes, Autoimmunity, Practice Guidelines as Topic, Qualitative Research, Early Diagnosis, Advanced Practice Nursing

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review

Implications for advanced practice nurses when pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is suspected: a qualitative study

Abstract

Integrity signals

Claims the paper makes

Claims other papers make about this one

Self-check

Cites

Cited by

Related

Record

About these checks