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Implications of a paediatrician-psychologist tandem for sickle cell disease care and impact on cognitive functioning

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Abstract

Sickle cell disease (SCD), a life-threatening chronic disease, necessitates a paediatric treatment plan that considers the influence of psychological, family and intercultural factors. At the Louis-Mourier Hospital (APHP) in Colombes, France, we introduced an original paediatric-psychological partnership where a clinical psychologist accompanies the paediatrician at programmed consultations. We evaluated children and their parents treated in Colombes and in two other paediatric units using standardized culture-free tools and clinical interviews to evaluate the psychological repercussions of SCD. We first present a global view of the different ways that SCD affects both children and their families. We then discuss findings from a study evaluating the overall efficacy of an integrated psycho-medical treatment model as compared to the usual medical care model. Children in the integrated care model improved their cognitive functioning assessed using the Rey-Osterrieth complex figure test compared to treatment as usual.

Conclusion: Findings suggest that the concept of a “partnership practice” can improve children’s ability to grapple with SCD and is a promising approach for long-term care of SCD.

What is Known:

• Painful crises of sickle cell disease are unpredictable and appear in early childhood

• Stress as well as the complex psychological and intercultural issues associated with SCD may aggravate the children’s symptoms

• Standard pediatric care and research deal primarily with medical issues

What is New:

• Evidence-based research examining the psychological repercussions of SCD in pediatric treatment as well as the parental distress

• First study using standardized culture-free tools

• Cognitive functioning improves under an innovative “partnership” model

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Abbreviations

APHP:

Assistance Publique-Hôpitaux de Paris

C1:

Centre 1

C2:

Centre 2

C3:

Centre 3

CI:

Confidence interval

IQ:

Intellectual quotient

KIDSCREEN:

Health-related quality of life questionnaire for children and adolescents

MRI:

Magnetic resonance imaging

MRA:

Magnetic resonance angiography

ROCF:

Rey-Osterrieth complex figure test

SCD:

Sickle cell disease

VOC:

Vaso-occlusive crisis

WISC:

Wechsler Intelligence Scale for Children

WISC-R:

Wechsler Intelligence Scale for Children-Revised

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Acknowledgements

This work was supported by a grant from the Fondation de France (40 avenue Hoche, Paris, F-75008; www.fondationdefrance.org) in the call for projects 2011 “Recherche, Soigner, Soulager, Accompagner” (No. 00023442).

Adrienne Lerner and Marie-Hélène Odièvre thank Mme Sophie Lasserre at the Fondation de France for her continued and generous support.

Special thanks to the staff of the three participating centres that facilitated the data collection.

We thank Dr. Lawrence M. Scheier from LARS Research Institute, Scottsdale, USA, for proofreading the manuscript.

The authors thank the children and their parents for their generous participation.

Author information

Authors and Affiliations

  1. Service de Pédiatrie, AP-HP, Hôpital Louis-Mourier, F-92700, Colombes, France

    Adrienne Lerner, Louise Malou-Dhaussy, Flaviana Maroja-Cox & Marie-Hélène Odièvre

  2. Unité de Recherche Clinique, Fondation Rothschild, F-75019, Paris, France

    Hervé Picard & Laurence Salomon

  3. Service de Pédiatrie, Centre Hospitalier Sud Francilien, F-91100, Evry, France

    Adrien May

  4. Service de Pédiatrie, AP-HP, Hôpital Antoine-Béclère, F-92140, Clamart, France

    Vincent Gajdos

  5. Service de Pédiatrie, AP-HP, Hôpital Armand Trousseau, 26 avenue du Docteur Arnold Netter, F-75012, Paris, France

    Marie-Hélène Odièvre

  6. UMR_S1134, Inserm, Université Paris Diderot, Sorbonne Paris Cité, Institut National de la Transfusion Sanguine, F-75015, Paris, France

    Marie-Hélène Odièvre

Authors
  1. Adrienne Lerner
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  2. Hervé Picard
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  3. Adrien May
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  4. Vincent Gajdos
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  5. Louise Malou-Dhaussy
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  6. Flaviana Maroja-Cox
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  7. Laurence Salomon
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  8. Marie-Hélène Odièvre
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Contributions

Each author listed has approved submission of this version and takes full responsibility for this manuscript.

Adrienne Lerner participated in the collaborative consultations with the paediatrician and wrote the paper;

Hervé Picard provided statistical and methodological advice and conducted data analysis; Adrien May and Vincent Gajdos performed clinical follow-up of the children; Louise Malou-Dhaussy and Flaviana Estrela interviewed and evaluated parents and children; Laurence Salomon provided advice on the study methodology and Marie-Hélène Odièvre, attending paediatrician, conducted clinical follow-up of the children, supervised the study and wrote the paper.

Corresponding author

Correspondence to Marie-Hélène Odièvre.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval and informed consent

All procedures performed involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its subsequent amendments or comparable ethical standards.

The official research ethics board (Institutional Review Board and National Commission on Informatics and Liberty (CNIL) approved the research protocol. Children provided verbal assent and parents provided written informed consent.

Additional information

Communicated by Mario Bianchetti

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Lerner, A., Picard, H., May, A. et al. Implications of a paediatrician-psychologist tandem for sickle cell disease care and impact on cognitive functioning. Eur J Pediatr 177, 193–203 (2018). https://doi.org/10.1007/s00431-017-3050-5

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  • DOI: https://doi.org/10.1007/s00431-017-3050-5

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