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Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT

Abstract

Background

Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL.

Methods

Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months’ follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up.

Results

We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39–3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21–2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13–0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36–1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months’ follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together).

Conclusions

In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.

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Data Availability

The data that support the findings of this study are available from the corresponding author on reasonable request.

References

  1. National Alliance for Caregiving; AARP Public Policy Institute. Caregiving in the U.S. 2015. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf. Accessed 5 Sept 2019.

  2. Meyers E, Lin A, Lester E, Shaffer K, Rosand J, Vranceanu A-M. Baseline resilience and depression symptoms predict trajectory of depression in dyads of patients and their informal caregivers following discharge from the neuro-ICU. Gen Hosp Psychiatry. 2020;62:87–92.

    Article  PubMed  Google Scholar 

  3. Meyers EE, Shaffer KM, Gates M, Lin A, Rosand J, Vranceanu A-M. Baseline resilience and posttraumatic symptoms in dyads of neurocritical patients and their informal caregivers: a prospective dyadic analysis. Psychosomatics. 2020;61(2):135–44.

    Article  PubMed  Google Scholar 

  4. Choi KW, Shaffer KM, Zale EL, Funes CJ, Koenen KC, Tehan T, et al. Early risk and resiliency factors predict chronic posttraumatic stress disorder in caregivers of patients admitted to a neuroscience ICU. Crit Care Med. 2018;46(5):713–9.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Trevick SA, Lord AS. Post-traumatic stress disorder and complicated grief are common in caregivers of neuro-ICU patients. Neurocrit Care. 2017;26(3):436–43.

    Article  PubMed  Google Scholar 

  6. Garton ALA, Sisti JA, Gupta VP, Christophe BR, Connolly ES Jr. Poststroke post-traumatic stress disorder: a review. Stroke. 2017;48(2):507–12. Erratum in: Stroke. 2017;48(3):e96.

  7. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med. 1998;46(12):1569–85.

  8. Jackson JC, Mitchell N, Hopkins RO. Cognitive functioning, mental health, and quality of life in ICU survivors: an overview. Psychiatr Clin North Am. 2015;38(1):91–104.

    Article  PubMed  Google Scholar 

  9. van Beusekom I, Bakhshi-Raiez F, de Keizer NF, Dongelmans DA, van der Schaaf M. Reported burden on informal caregivers of ICU survivors: a literature review. Crit Care. 2016;20:16.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Comini L, Rocchi S, Bruletti G, Paneroni M, Bertolotti G, Vitacca M. Impact of clinical and quality of life outcomes of long-stay ICU survivors recovering from rehabilitation on caregivers’ burden. Respir Care. 2016;61(4):405–15.

    Article  PubMed  Google Scholar 

  11. Soliman IW, de Lange DW, Peelen LM, Cremer OL, Slooter AJ, Pasma W, et al. Single-center large-cohort study into quality of life in Dutch intensive care unit subgroups, 1 year after admission, using EuroQoL EQ-6D-3L. J Crit Care. 2015;30(1):181–6.

    Article  PubMed  Google Scholar 

  12. van Beusekom I, Bakhshi-Raiez F, de Keizer NF, van der Schaaf M, Termorshuizen F, Dongelmans DA. Dutch ICU survivors have more consultations with general practitioners before and after ICU admission compared to a matched control group from the general population. PLoS ONE. 2019;14(5):e0217225.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Stricker KH, Cavegn R, Takala J, Rothen HU. Does ICU length of stay influence quality of life? Acta Anaesthesiol Scand. 2005;49(7):975–83.

    Article  CAS  PubMed  Google Scholar 

  14. Iribarren-Diarasarri S, Aizpuru-Barandiaran F, Muñoz-Martínez T, Loma-Osorio A, Hernández-López M, Ruiz-Zorrilla JM, et al. Health-related quality of life as a prognostic factor of survival in critically ill patients. Intensive Care Med. 2009;35(5):833–9.

    Article  PubMed  Google Scholar 

  15. Alfheim HB, Småstuen MC, Hofsø K, Tøien K, Rosseland LA, Rustøen T. Quality of life in family caregivers of patients in the intensive care unit: a longitudinal study. Aust Crit Care. 2019;32(6):479–85.

    Article  PubMed  Google Scholar 

  16. Presciutti A, Meyers EE, Reichman M, Vranceanu A-M. Associations between baseline total PTSD symptom severity, specific PTSD symptoms, and 3-month quality of life in neurologically intact neurocritical care patients and informal caregivers. Neurocrit Care. 2021;34(1):54–63.

    Article  PubMed  Google Scholar 

  17. Zale EL, Heinhuis TJ, Tehan T, Salgueiro D, Rosand J, Vranceanu A-M. Resiliency is independently associated with greater quality of life among informal caregivers to neuroscience intensive care unit patients. Gen Hosp Psychiatry. 2018;52:27–33.

    Article  PubMed  Google Scholar 

  18. Vranceanu A-M, Riklin E, Merker VL, Macklin EA, Park ER, Plotkin SR. Mind–body therapy via videoconferencing in patients with neurofibromatosis: an RCT. Neurology. 2016;87(8):806–14.

    Article  PubMed  Google Scholar 

  19. Jensen JF, Egerod I, Bestle MH, Christensen DF, Elklit A, Hansen RL, et al. A recovery program to improve quality of life, sense of coherence and psychological health in ICU survivors: a multicenter randomized controlled trial, the RAPIT study. Intensive Care Med. 2016;42(11):1733–43.

    Article  PubMed  Google Scholar 

  20. Bohart S, Egerod I, Bestle MH, Overgaard D, Christensen DF, Jensen JF. Recovery programme for ICU survivors has no effect on relatives’ quality of life: secondary analysis of the RAPIT-study. Intensive Crit Care Nurs. 2018;47:39–45.

    Article  PubMed  Google Scholar 

  21. Pucciarelli G, Lommi M, Magwood GS, Simeone S, Colaceci S, Vellone E, et al. Effectiveness of dyadic interventions to improve stroke patient–caregiver dyads’ outcomes after discharge: a systematic review and meta-analysis study. Eur J Cardiovasc Nurs. 2021;20(1):14–33.

    Article  PubMed  Google Scholar 

  22. Bannon S, Lester EG, Gates MV, McCurley J, Lin A, Rosand J, et al. Recovering together: building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; a feasibility study. Pilot Feasibility Stud. 2020;6:75.

    Article  PubMed  PubMed Central  Google Scholar 

  23. McCurley JL, Funes CJ, Zale EL, Lin A, Jacobo M, Jacobs JM, et al. Preventing chronic emotional distress in stroke survivors and their informal caregivers. Neurocrit Care. 2019;30(3):581–9.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Vranceanu A-M, Bannon S, Mace R, Lester E, Meyers E, Gates M, et al. Feasibility and efficacy of a resiliency intervention for the prevention of chronic emotional distress among survivor-caregiver dyads admitted to the neuroscience intensive care unit: a randomized clinical trial. JAMA Netw Open. 2020;3(10):e2020807.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Teasdale G, Jennett B. Assessment of coma and impaired consciousness: A practical scale. Lancet. 1974;304(7872):81–4.

    Article  Google Scholar 

  26. Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–98.

    Article  CAS  Google Scholar 

  27. Meyers EE, McCurley J, Lester E, Jacobo M, Rosand J, Vranceanu A-M. Building resiliency in dyads of patients admitted to the neuroscience intensive care unit and their family caregivers: lessons learned from William and Laura. Cogn Behav Pract. 2020;27(3):321–35.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Shaffer KM, Jacobs JM, Coleman JN, Temel JS, Rosand J, Greer JA, et al. Anxiety and depressive symptoms among two seriously medically ill populations and their family caregivers: a comparison and clinical implications. Neurocrit Care. 2017;27(2):180–6.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale: an updated literature review. J Psychosom Res. 2002;52(2):69–77.

    Article  PubMed  Google Scholar 

  30. Blevins CA, Weathers FW, Davis MT, Witte TK, Domino JL. The posttraumatic stress disorder checklist for DSM-5 (PCL-5): development and initial psychometric evaluation. J Trauma Stress. 2015;28(6):489–98.

    Article  PubMed  Google Scholar 

  31. Broglio K. Randomization in clinical trials: permuted blocks and stratification. JAMA. 2018;319(21):2223–4.

    Article  PubMed  Google Scholar 

  32. The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28(3):551–8.

    Article  Google Scholar 

  33. Jang Y, Hsieh C-L, Wang Y-H, Wu Y-H. A validity study of the WHOQOL-BREF assessment in persons with traumatic spinal cord injury. Arch Phys Med Rehabil. 2004;85(11):1890–5.

    Article  PubMed  Google Scholar 

  34. Chiu W-T, Huang S-J, Hwang H-F, Tsauo J-Y, Chen C-F, Tsai S-H, et al. Use of the WHOQOL-BREF for evaluating persons with traumatic brain injury. J Neurotrauma. 2006;23(11):1609–20.

    Article  PubMed  Google Scholar 

  35. Wilz G, Barskova T. Evaluation of a cognitive behavioral group intervention program for spouses of stroke patients. Behav Res Ther. 2007;45(10):2508–17.

    Article  PubMed  Google Scholar 

  36. Fumis RRL, Ferraz AB, de Castro I, de Oliveira HSB, Moock M, Junior JMV. Mental health and quality of life outcomes in family members of patients with chronic critical illness admitted to the intensive care units of two Brazilian hospitals serving the extremes of the socioeconomic spectrum. PLoS ONE. 2019;14(9):e0221218.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  37. Rosén H, Ahlström G, Lexén A. Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes. Health Qual Life Outcomes. 2020;18(1):103.

    Article  PubMed  PubMed Central  Google Scholar 

  38. de Mol M, Visser S, Aerts JGJV, Lodder P, de Vries J, den Oudsten BL. Satisfactory results of a psychometric analysis and calculation of minimal clinically important differences of the World Health Organization Quality of Life-BREF questionnaire in an observational cohort study with lung cancer and mesothelioma patients. BMC Cancer. 2018;18(1):1173.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Funes CJ, Mace RA, Macklin EA, Plotkin SR, Jordan JT, Vranceanu A-M. First report of quality of life in adults with neurofibromatosis 2 who are deafened or have significant hearing loss: results of a live-video randomized control trial. J Neurooncol. 2019;143(3):505–13.

    Article  PubMed  Google Scholar 

  40. Bannon et al. Emotional Distress in Neuro-ICU Survivor-Caregiver Dyads: The Recovering Together Randomized Control Trial. (2021, under review)

  41. Daniels LM, Johnson AB, Cornelius PJ, Bowron C, Lehnertz A, Moore M, et al. Improving quality of life in patients at risk for post–intensive care syndrome. Mayo Clin Proc Innov Qual Outcomes. 2018;2(4):359–69.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Hawthorne G, Herrman H, Murphy B. Interpreting the WHOQOL-Brèf: preliminary population norms and effect sizes. Soc Indic Res. 2006;77:37–59.

    Article  Google Scholar 

  43. Evans CH Jr, Ildstad ST, editors; Institute of Medicine Committee on Strategies for Small-Number-Participant Clinical Research Trials. Small clinical trials: issues and challenges. Washington (DC): National Academies Press; 2001.

  44. Cuthbertson BH, Roughton S, Jenkinson D, Maclennan G, Vale L. Quality of life in the five years after intensive care: a cohort study. Crit Care. 2010;14(1):R6.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Dowdy DW, Eid MP, Sedrakyan A, Mendez-Tellez PA, Pronovost PJ, Herridge MS, et al. Quality of life in adult survivors of critical illness: a systematic review of the literature. Intensive Care Med. 2005;31(5):611–20.

    Article  PubMed  Google Scholar 

  46. Oeyen SG, Vandijck DM, Benoit DD, Annemans L, Decruyenaere JM. Quality of life after intensive care: a systematic review of the literature. Crit Care Med. 2010;38(12):2386–400.

    Article  PubMed  Google Scholar 

  47. Frick S, Uehlinger DE, Zürcher Zenklusen RM. Assessment of former ICU patients’ quality of life: comparison of different quality-of-life measures. Intensive Care Med. 2002;28(10):1405–10.

    Article  PubMed  Google Scholar 

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Funding

This study was funded by a grant-in-aid from the American Heart Association, Grant 5R21 NR017979 from the National Institute of Nursing Research to Dr. Vranceanu, and the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital.

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All authors have reviewed and approve the final version as submitted.

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Correspondence to Ana-Maria Vranceanu.

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Conflicts of Interest

Dr. Vranceanu reported receiving funding from the Department of Defense and the National Institutes of Health and serving on the scientific advisory board for the Calm application, outside of the submitted work. Dr. Macklin reported serving on the scientific advisory boards of Biogen, Cerevance, and Stoparkinson Healthcare Systems, serving on the data safety monitoring boards of Acorda Therapeutics, Novartis Pharmaceuticals, and Takeda Pharmaceutical Company, and receiving grants from Acorda, Amylyx Pharmaceuticals, GlaxoSmithKline, Mitsubishi Tanabe Pharmaceuticals, Ra Pharmaceuticals, Biohaven Pharmaceuticals, Clene Nanomedicine, and Prilenia Therapeutics, outside the submitted work. Dr. Rosand reported receiving grants from the National Institutes of Health and OneMind and serving as a consultant for Boehringer Ingelheim, Pfizer, and New Beta Innovation, outside the submitted work. No other disclosures were reported.

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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 Declaration of Helsinki and its later amendments or comparable ethical standards. Consent was obtained from all individual participants included in the study.

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Lester, E.G., Mace, R.A., Bannon, S.M. et al. Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT. Neurocrit Care 35, 756–766 (2021). https://doi.org/10.1007/s12028-021-01222-3

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  • DOI: https://doi.org/10.1007/s12028-021-01222-3

Keywords

  • Dyads
  • Caregivers
  • Quality of life
  • Neurological illness
  • Neuro-ICU