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The effects of SmartCare© on neuro-oncology family caregivers’ distress: a randomized controlled trial

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A Correction to this article was published on 24 May 2022

This article has been updated

Abstract

Purpose

Patients with primary malignant brain tumors have high symptom burden and commonly rely on family caregivers for practical and emotional support. This can lead to negative mental and physical consequences for caregivers. We investigated effectiveness of an 8-week nurse-led online needs-based support program (SmartCare©) with and without online self-guided cognitive behavioral therapy (CBT) for depression compared to enhanced care as usual (ECAU) on depressive symptoms, caregiving-specific distress, anxiety, mastery, and burden.

Methods

Family caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCare©; ECAU plus SmartCare©; ECAU only. Primary outcomes (depressive symptoms; caregiving-specific distress) and secondary outcomes (anxiety, caregiver mastery, and caregiver burden) were assessed online. Intention to treat (ITT) and per protocol (PP) analyses of covariance corrected for baseline scores were performed for outcomes at 4 months.

Results

In total, 120 family caregivers participated. Accrual and CBT engagement were lower than expected, therefore intervention groups were combined (n = 80) and compared to ECAU (n = 40). For depressive symptoms, no statistically significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with ECAU (ITT: p = 0.01, partial ɳ2 = 0.08; PP: p = 0.02, partial ɳ2 = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ2 = 0.04; PP: p = 0.07, partial ɳ2 = 0.05).

Conclusions

SmartCare©, with or without self-guided CBT, reduced caregiving-specific distress with a trend towards improving mastery. SmartCare© has the potential to improve the lives of families coping with a brain tumor diagnosis.

Trial registration number

NCT02058745; 10 February 2014

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All raw data is held securely by the research team and access can be requested if required.

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Acknowledgements

We would like to thank the research nurses and staff involved: Judy Knapp RN, Anna Fisher RN, Sue Hughes RN, Mary Roberge RN, Sue Misko RN, A. Blair Powell BS. We also thank participating caregivers and patients, and the clinical teams that have supported recruitment.

Funding

This work was funded by the National Institute for Nursing Research R01 NR013170. Florien Boele was supported by a Yorkshire Cancer Research Fellowship (L389FB).

Author information

Authors and Affiliations

  1. Leeds Institute of Medical Research At St James’s, University of Leeds, Beckett Street, Leeds, LS9 7TF, UK

    Florien W. Boele

  2. Leeds Institute of Health Sciences, University of Leeds, Leeds, LS2 9NL, UK

    Florien W. Boele

  3. School of Nursing, University of Pittsburgh, 336 Victoria Bldg., 3500 Victoria St., Pittsburgh, PA, 15261, USA

    Jason M. Weimer, Heidi S. Donovan & Paula R. Sherwood

  4. School of Psychology, University of Pittsburgh, 3490 O’Hara St., Pittsburgh, PA, 15261, USA

    Anna L. Marsland

  5. Center for Cancer Research, National Cancer Institute, Bethesda, MD, USA

    Terri S. Armstrong

  6. College of Nursing C346 Life Sciences Bldg, Michigan State University, 1355 Bogue St East, Lansing, MI, 48824, USA

    Charles W. Given

  7. Division of Hematology/Oncology, Hillman Cancer Center, University of Pittsburgh Medical Center, 5115 Centre Avenue, Pittsburgh, PA, 15232, USA

    Jan Drappatz

  8. School of Nursing, University of Pittsburgh, 415 Victoria Building, 3500 Victoria St, Pittsburgh, PA, 15261, USA

    Heidi S. Donovan

Authors
  1. Florien W. Boele
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  2. Jason M. Weimer
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  3. Anna L. Marsland
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  4. Terri S. Armstrong
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  7. Heidi S. Donovan
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  8. Paula R. Sherwood
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Contributions

Florien Boele: data curation, formal analysis, writing (original draft), writing (review and editing). Jason Weimer: investigation, data curation, project administration, writing (review and editing). Judith Proudfoot: conceptualization, writing (review and editing). Anna Marsland, Charles Given: conceptualization, methodology, writing (review and editing). Terri Armstrong: investigation, data curation, writing (review and editing). Jan Drappatz: data curation, resources, writing (review and editing). Heidi Donovan: conceptualization, investigation, methodology, supervision, funding acquisition, writing (review and editing). Paula Sherwood: conceptualization, investigation, methodology, data curation, supervision, funding acquisition, writing (review and editing).

Corresponding authors

Correspondence to Heidi S. Donovan or Paula R. Sherwood.

Ethics declarations

Ethics approval

All procedures performed in studies 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 later amendments or comparable ethical standards.

Consent to participate

All participants provided written informed consent.

Consent for publication

All participants provided consent for publication.

Competing interests

Jan Drappatz: equity from Gilead and Pfizer, consulting fees from Agios. Judith Proudfoot: involved in development of Beating the Blues, and consultancy to the company formerly distributing the program. All other authors declare no competing interests.

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Heidi S Donovan and Paula R Sherwood are co-senior authors.

This article has already been printed but the online version is revised. Judith Proudfoot wanted to be removed in the authorgroup.

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Boele, F.W., Weimer, J.M., Marsland, A.L. et al. The effects of SmartCare© on neuro-oncology family caregivers’ distress: a randomized controlled trial. Support Care Cancer 30, 2059–2068 (2022). https://doi.org/10.1007/s00520-021-06555-5

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  • DOI: https://doi.org/10.1007/s00520-021-06555-5

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