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Diverse learners: learning disabilities and quality of life following mind–body and health education interventions for adults with neurofibromatosis

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Abstract

Purpose

Neurofibromatosis (NF) is associated with low quality-of-life (QoL). Learning disabilities are prevalent among those with NF, further worsening QoL and potentially impacting benefits from mind–body and educational interventions, yet research on this population is scarce. Here, we address this gap by comparing NF patients with and without learning disabilities on QoL at baseline and QoL-related gains following two interventions.

Methods

Secondary analysis of a fully-powered RCT of a mind–body program (Relaxation Response Resiliency Program for NF; 3RP-NF) versus an educational program (Health Enhancement Program for NF; HEP-NF) among 228 adults with NF. Participants reported QoL in four domains (Physical Health, Psychological, Social Relationships, and Environmental). We compare data at baseline, post-treatment, and 12-month follow-up, controlling for intervention type.

Results

At baseline, individuals with NF and learning disabilities had lower Psychological (T = -3.0, p = .001) and Environmental (T = -3.8, p < .001) QoL compared to those without learning disabilities. Both programs significantly improved all QoL domains (ps < .0001–0.002) from baseline to post-treatment, regardless of learning disability status. However, those with learning disabilities exceeded the minimal clinically important difference in only one domain (Psychological QoL) compared to three domains in individuals without learning disabilities. Moreover, those with learning disabilities failed to sustain statistically significant gains in Psychological QoL at 12-months, while those without learning disabilities sustained all gains.

Conclusion

Adults with NF and learning disabilities have lower Psychological and Environmental QoL. While interventions show promise in improving QoL regardless of learning disabilities, additional measures may bolster clinical benefit and sustainability among those with learning disabilities.

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Data Availability

The data that support the findings of this study are available from the corresponding author, A.M.V., upon reasonable request.

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Acknowledgements

This work has been funded by the Department of Defense grant #W81XWH-17-1-0121 and National Center for Complementary and Integrative Health grant #5K24AT011760 to A.M.V. JG’s effort is supported by the National Center for Complementary and Integrative Health grant #K23AT01065301A1.

Funding

This work has been funded by the Department of Defense grant #W81XWH-17–1-0121 and National Center for Complementary and Integrative Health grant #5K24AT011760 to A.M.V. JG’s effort is supported by the National Center for Complementary and Integrative Health grant #K23AT01065301A1.

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Authors and Affiliations

  1. Center for Health Outcomes and Interdisciplinary Research (CHOIR), Department of Psychiatry, Massachusetts General Hospital, One Bowdoin Square, 1st Floor, Suite 100, Boston, MA, 02114, USA

    Millan R. Kanaya, Jonathan Greenberg, Jafar Bakhshaie & Ana-Maria Vranceanu

  2. Harvard Medical School, Boston, MA, USA

    Jonathan Greenberg, Jafar Bakhshaie & Ana-Maria Vranceanu

Authors
  1. Millan R. Kanaya
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  2. Jonathan Greenberg
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  3. Jafar Bakhshaie
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  4. Ana-Maria Vranceanu
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Contributions

M.R.K., J.G., J.B., and A.M.V. conceptualized the manuscript. M.R.K. and J.G. wrote the main manuscript text. J.B. ran analyses and provided critical review. A.M.V provided critical review and funding. All authors reviewed the manuscript.

Corresponding author

Correspondence to Ana-Maria Vranceanu.

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The authors declare no competing interests.

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Authors declare that they have no conflicts of interest.

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The study was ethically reviewed and approved by Massachusetts General Hospital’s Institutional Review Board (IRB).

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All participants provided written informed consent after reviewing study and safety procedures with study staff.

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Kanaya, M.R., Greenberg, J., Bakhshaie, J. et al. Diverse learners: learning disabilities and quality of life following mind–body and health education interventions for adults with neurofibromatosis. J Neurooncol 167, 315–322 (2024). https://doi.org/10.1007/s11060-024-04610-9

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