Multi-stakeholder perspectives on managing insomnia in cancer survivors: recommendations to reduce barriers and translate patient-centered research into practice

Abstract

Purpose

Insomnia is a debilitating symptom experienced by nearly 60% of cancer survivors. Building on our prior research showing the clinical benefit of cognitive behavioral therapy for insomnia (CBT-I) and acupuncture, we organized a workshop of patient advocates and clinician stakeholders to understand the barriers and develop recommendations for the dissemination and implementation of these interventions.

Methods

Participants completed a pre-workshop survey assessing their experiences with insomnia and barriers to insomnia treatment and participated in a workshop facilitated by professionals and patient experts. Responses from the survey were tabulated and the discussions from the workshop were content-analyzed to extract relevant factors that may influence dissemination and implementation.

Results

Multidisciplinary and stakeholder workshop participants (N = 51) identified barriers and proposed solutions and future recommendations for dissemination and implementation of evidence-based interventions to improve sleep health in cancer survivors. Barriers were identified in four categories: patient (e.g., knowledge, time, cost), clinician (e.g., education, time, capacity), institutional (e.g., space, insurance reimbursement, referrals), and societal (e.g., lack of prioritization for sleep issues). Based on these categories, we made six recommendations for dissemination and implementation of research findings to improve clinical sleep management in oncology.

Conclusion

Dissemination and implementation efforts are necessary to translate research into clinical practice to improve patient care.

Implications for Cancer Survivors

Sleep needs to be prioritized in cancer care, but patient, provider, and institutional/societal barriers remain. Dedicated effort and resources at each of these levels are needed to help millions of people affected by cancer manage their insomnia and improve their quality of life.

This is a preview of subscription content, access via your institution.

Data availability

Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.

References

  1. 1.

    Palesh OG, Roscoe JA, Mustian KM, Roth T, Savard J, Ancoli-Israel S, et al. Prevalence, demographics, and psychological associations of sleep disruption in patients with cancer: University of Rochester Cancer Center-Community Clinical Oncology Program. J Clin Oncol. 2010;28(2):292–8.

    PubMed  Article  Google Scholar 

  2. 2.

    Savard J, Ivers H, Villa J, Caplette-Gingras A, Morin CM. Natural course of insomnia comorbid with cancer: an 18-month longitudinal study. J Clin Oncol. 2011;29(26):3580–6.

    Article  Google Scholar 

  3. 3.

    Nishiura M, Tamura A, Nagai H, Matsushima E. Assessment of sleep disturbance in lung cancer patients: relationship between sleep disturbance and pain, fatigue, quality of life, and psychological distress. Palliat Support Care. 2015;13(3):575–81.

    PubMed  Article  Google Scholar 

  4. 4.

    Ruel S, Savard J, Ivers H. Insomnia and self-reported infections in cancer patients: an 18-month longitudinal study. Health Psychol. 2015;34(10):983–91.

    PubMed  Article  Google Scholar 

  5. 5.

    Lowery-Allison AE, Passik SD, Cribbet MR, Reinsel RA, O'Sullivan B, Norton L, et al. Sleep problems in breast cancer survivors 1-10 years posttreatment. Palliat Support Care. 2018;16(3):325–34.

    PubMed  Article  Google Scholar 

  6. 6.

    Gonzalez BD, Grandner MA, Caminiti CB, Hui SKA. Cancer survivors in the workplace: sleep disturbance mediates the impact of cancer on healthcare expenditures and work absenteeism. Support Care Cancer. 2018;26:4049–55.

    PubMed  PubMed Central  Article  Google Scholar 

  7. 7.

    Garland SN, Gehrman P, Barg FK, Xie SX, Mao JJ. CHoosing Options for Insomnia in Cancer Effectively (CHOICE): design of a patient centered comparative effectiveness trial of acupuncture and cognitive behavior therapy for insomnia. Contemp Clin Trials. 2016;47:349–55.

    PubMed  Article  Google Scholar 

  8. 8.

    Garland SN, Xie SX, DuHamel K, Bao T, Li Q, Barg FK, et al. Acupuncture versus cognitive behavioral therapy for insomnia in cancer survivors: a randomized clinical trial. J Natl Cancer Inst. 2019;111:1323–31.

    PubMed  PubMed Central  Article  Google Scholar 

  9. 9.

    Johnson JA, Rash JA, Campbell TS, Savard J, Gehrman PR, Perlis M, et al. A systematic review and meta-analysis of randomized controlled trials of cognitive behavior therapy for insomnia (CBT-I) in cancer survivors. Sleep Med Rev. 2016;27:20–8.

    PubMed  Article  Google Scholar 

  10. 10.

    Edinger JD, Wohlgemuth WK, Radtke RA, Marsh GR, Quillian RE. Cognitive behavioral therapy for treatment of chronic primary insomnia: a randomized controlled trial. JAMA. 2001;285(14):1856–64.

    CAS  PubMed  Article  Google Scholar 

  11. 11.

    Morin CM, Colecchi C, Stone J, Sood R, Brink D. Behavioral and pharmacological therapies for late-life insomnia: a randomized controlled trial. JAMA. 1999;281(11):991–9.

    CAS  PubMed  Article  Google Scholar 

  12. 12.

    Edinger JD, Olsen MK, Stechuchak KM, Means MK, Lineberger MD, Kirby A, et al. Cognitive behavioral therapy for patients with primary insomnia or insomnia associated predominantly with mixed psychiatric disorders: a randomized clinical trial. Sleep. 2009;32(4):499–510.

    PubMed  PubMed Central  Article  Google Scholar 

  13. 13.

    Qaseem A, Kansagara D, Forciea MA, Cooke M, Denberg TD, for the Clinical Guidelines Committee of the American College of Physicians. Management of chronic insomnia disorder in adults: a clinical practice guideline from the American College of Physicians. Ann Intern Med. 2016;165(2):125–33.

    PubMed  Article  Google Scholar 

  14. 14.

    Morin CM, Hauri PJ, Espie CA, Spielman AJ, Buysse DJ, Bootzin RR. Nonpharmacologic treatment of chronic insomnia. An American Academy of Sleep Medicine review. Sleep. 1999;22(8):1134–56.

    CAS  PubMed  Article  Google Scholar 

  15. 15.

    Morgenthaler T, et al. Practice parameters for the psychological and behavioral treatment of insomnia: an update. An American Academy of Sleep Medicine report. Sleep. 2006;29(11):1415–9.

    PubMed  Article  Google Scholar 

  16. 16.

    Morin CM, Bootzin RR, Buysse DJ, Edinger JD, Espie CA, Lichstein KL. Psychological and behavioral treatment of insomnia: update of the recent evidence (1998-2004). Sleep. 2006;29(11):1398–414.

    PubMed  Article  Google Scholar 

  17. 17.

    Fu, C., et al., Acupuncture improves peri-menopausal insomnia: a randomized controlled trial. Sleep, 2017. 40(11).

  18. 18.

    Yin X, Gou M, Xu J, Dong B, Yin P, Masquelin F, et al. Efficacy and safety of acupuncture treatment on primary insomnia: a randomized controlled trial. Sleep Med. 2017;37:193–200.

    PubMed  Article  Google Scholar 

  19. 19.

    Zia, F.Z., et al., The National Cancer Institute’s Conference on Acupuncture for Symptom Management in Oncology: state of the science, evidence, and research gaps. J Natl Cancer Inst Monogr, 2017. 2017(52).

  20. 20.

    He, Y., et al., Clinical evidence for association of acupuncture and acupressure with improved cancer pain: a systematic review and meta-analysis. JAMA Oncol, 2019.

    Google Scholar 

  21. 21.

    Garland SN, Xie SX, Li Q, Seluzicki C, Basal C, Mao JJ. Comparative effectiveness of electro-acupuncture versus gabapentin for sleep disturbances in breast cancer survivors with hot flashes: a randomized trial. Menopause. 2017;24(5):517–23.

    PubMed  PubMed Central  Article  Google Scholar 

  22. 22.

    Mao JJ, Bowman MA, Xie SX, Bruner D, DeMichele A, Farrar JT. Electroacupuncture versus gabapentin for hot flashes among breast cancer survivors: a randomized placebo-controlled trial. J Clin Oncol. 2015;33(31):3615–20.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  23. 23.

    Howell D, Keller-Olaman S, Oliver TK, Hack TF, Broadfield L, Biggs K, et al. A pan-Canadian practice guideline and algorithm: screening, assessment, and supportive care of adults with cancer-related fatigue. Curr Oncol. 2013;20(3):e233–46.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  24. 24.

    Howell D, Oliver TK, Keller-Olaman S, Davidson JR, Garland S, Samuels C, et al. Sleep disturbance in adults with cancer: a systematic review of evidence for best practices in assessment and management for clinical practice. Ann Oncol. 2014;25(4):791–800.

    CAS  Article  Google Scholar 

  25. 25.

    Thomas A, Grandner M, Nowakowski S, Nesom G, Corbitt C, Perlis ML. Where are the behavioral sleep medicine providers and where are they needed? A geographic assessment. Behav Sleep Med. 2016;14(6):687–98.

    PubMed  PubMed Central  Article  Google Scholar 

  26. 26.

    Mao JJ, Palmer CS, Healy KE, Desai K, Amsterdam J. Complementary and alternative medicine use among cancer survivors: a population-based study. J Cancer Surviv. 2011;5(1):8–17.

    PubMed  Article  Google Scholar 

  27. 27.

    Davidson JR, Feldman-Stewart D, Brennenstuhl S, Ram S. How to provide insomnia interventions to people with cancer: insights from patients. Psychooncology. 2007;16(11):1028–38.

    PubMed  Article  Google Scholar 

  28. 28.

    Romito F, Cormio C, de Padova S, Lorusso V, Berio MA, Fimiani F, et al. Patients attitudes towards sleep disturbances during chemotherapy. Eur J Cancer Care (Engl). 2014;23(3):385–93.

    CAS  Article  Google Scholar 

  29. 29.

    Siefert ML, Hong F, Valcarce B, Berry DL. Patient and clinician communication of self-reported insomnia during ambulatory cancer care clinic visits. Cancer Nurs. 2014;37(2):E51–9.

    PubMed  PubMed Central  Article  Google Scholar 

  30. 30.

    Khater W, Masha’al D, Al-Sayaheen A. Sleep assessment and interventions for patients living with cancer from the patients’ and nurses’ perspective. Int J Palliat Nurs. 2019;25(7):316–24.

    PubMed  Article  Google Scholar 

  31. 31.

    Zhou ES, Partridge AH, Syrjala KL, Michaud AL, Recklitis CJ. Evaluation and treatment of insomnia in adult cancer survivorship programs. J Cancer Surviv. 2017;11(1):74–9.

    PubMed  Article  PubMed Central  Google Scholar 

  32. 32.

    Yun, H., L. Sun, and J.J. Mao, 2017 Growth of integrative medicine at leading cancer centers between 2009 and 2016: a systematic analysis of NCI-designated comprehensive cancer center websites. J Natl Cancer Inst Monogr. 2017(52).

  33. 33.

    Eriksen WT, Singerman L, Romero SAD, Bussell J, Barg FK, Mao JJ. Understanding the use of acupuncture for insomnia among cancer survivors: a qualitative study. J Altern Complement Med. 2018;24(9-10):962–7.

    PubMed  PubMed Central  Article  Google Scholar 

  34. 34.

    Bowen DJ, Sorensen G, Weiner BJ, Campbell M, Emmons K, Melvin C. Dissemination research in cancer control: where are we and where should we go? Cancer Causes Control. 2009;20(4):473–85.

    PubMed  PubMed Central  Article  Google Scholar 

  35. 35.

    Glasgow RE, Vinson C, Chambers D, Khoury MJ, Kaplan RM, Hunter C. National Institutes of Health approaches to dissemination and implementation science: current and future directions. Am J Public Health. 2012;102(7):1274–81.

    PubMed  PubMed Central  Article  Google Scholar 

  36. 36.

    Curry LA, Nembhard IM, Bradley EH. Qualitative and mixed methods provide unique contributions to outcomes research. Circulation. 2009;119(10):1442–52.

    PubMed  Article  PubMed Central  Google Scholar 

  37. 37.

    Stinson K, Tang NK, Harvey AG. Barriers to treatment seeking in primary insomnia in the United Kingdom: a cross-sectional perspective. Sleep. 2006;29(12):1643–6.

    PubMed  Article  PubMed Central  Google Scholar 

  38. 38.

    Garland SN, Eriksen W, Song S, Dearing J, Barg FK, Gehrman P, et al. Factors that shape preference for acupuncture or cognitive behavioral therapy for the treatment of insomnia in cancer patients. Support Care Cancer. 2018;26(7):2407–15.

    PubMed  PubMed Central  Article  Google Scholar 

  39. 39.

    Cheung JM, et al. Primary health care practitioner perspectives on the management of insomnia: a pilot study. Aust J Prim Health. 2014;20(1):103–12.

    PubMed  Article  Google Scholar 

  40. 40.

    Zhang Y, et al. Acupuncture use among American adults: what acupuncture practitioners can learn from National Health Interview Survey 2007? Evid Based Complement Alternat Med. 2012;2012:710750.

    PubMed  PubMed Central  Google Scholar 

  41. 41.

    Karlin BE, Trockel M, Taylor CB, Gimeno J, Manber R. National dissemination of cognitive behavioral therapy for insomnia in veterans: therapist- and patient-level outcomes. J Consult Clin Psychol. 2013;81(5):912–7.

    PubMed  Article  Google Scholar 

  42. 42.

    Manber R, Carney C, Edinger J, Epstein D, Friedman L, Haynes PL, et al. Dissemination of CBTI to the non-sleep specialist: protocol development and training issues. J Clin Sleep Med. 2012;8(2):209–18.

    PubMed  PubMed Central  Article  Google Scholar 

  43. 43.

    Sake FT, et al. Insomnia management in the Australian primary care setting. Behav Sleep Med. 2019;17(1):19–30.

    PubMed  Article  Google Scholar 

  44. 44.

    Moloney ME. ‘Sometimes, it’s easier to write the prescription’: physician and patient accounts of the reluctant medicalisation of sleeplessness. Sociol Health Illn. 2017;39(3):333–48.

    PubMed  Article  Google Scholar 

  45. 45.

    Koffel E, Bramoweth AD, Ulmer CS. Increasing access to and utilization of cognitive behavioral therapy for insomnia (CBT-I): a narrative review. J Gen Intern Med. 2018;33(6):955–62.

    PubMed  PubMed Central  Article  Google Scholar 

  46. 46.

    Howell D, et al. A Pan-Canadian practice guideline: prevention, screening, assessment, and treatment of sleep disturbances in adults with cancer. Support Care Cancer. 2013;21(10):2695–706.

    PubMed  Article  Google Scholar 

  47. 47.

    Anthierens S, Pasteels I, Habraken H, Steinberg P, Declercq T, Christiaens T. Barriers to nonpharmacologic treatments for stress, anxiety, and insomnia: family physicians’ attitudes toward benzodiazepine prescribing. Can Fam Physician. 2010;56(11):e398–406.

    PubMed  PubMed Central  Google Scholar 

  48. 48.

    Omvik S, Pallesen S, Bjorvatn B, Sivertsen B, Havik OE, Nordhus IH. Patient characteristics and predictors of sleep medication use. Int Clin Psychopharmacol. 2010;25(2):91–100.

    PubMed  Article  Google Scholar 

  49. 49.

    Koffel E, Amundson E, Polusny G, Wisdom JP. “You’re Missing Out on Something Great”: patient and provider perspectives on increasing the use of cognitive behavioral therapy for insomnia. Behav Sleep Med. 2020;18(3):358–71.

    PubMed  Article  Google Scholar 

  50. 50.

    Parthasarathy S, Carskadon MA, Jean-Louis G, Owens J, Bramoweth A, Combs D, et al. Implementation of sleep and circadian science: recommendations from the Sleep Research Society and National Institutes of Health Workshop. Sleep. 2016;39(12):2061–75.

    PubMed  Article  Google Scholar 

  51. 51.

    Baglioni, C., et al., 2019 The European Academy for Cognitive Behavioural Therapy for Insomnia: an initiative of the European Insomnia Network to promote implementation and dissemination of treatment. J Sleep Res,: p. e12967.

  52. 52.

    Neta G, Clyne M, Chambers DA. Dissemination and implementation research at the National Cancer Institute: a review of funded studies (2006-2019) and opportunities to advance the field. Cancer Epidemiol Biomark Prev. 2020.

  53. 53.

    Network, N.C.C. Survivorship (Version 2.2019). October 6, 2019]; Available from: https://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf.

  54. 54.

    Savard J, Ivers H. Screening for clinical insomnia in cancer patients with the Edmonton Symptom Assessment System-Revised: a specific sleep item is needed. Support Care Cancer. 2019;27:3777–83.

    PubMed  Article  Google Scholar 

  55. 55.

    Vincent N, Walsh K. Stepped care for insomnia: an evaluation of implementation in routine practice. J Clin Sleep Med. 2013;9(3):227–34.

    PubMed  PubMed Central  Article  Google Scholar 

  56. 56.

    Espie CA. “Stepped care”: a health technology solution for delivering cognitive behavioral therapy as a first line insomnia treatment. Sleep. 2009;32(12):1549–58.

    PubMed  PubMed Central  Article  Google Scholar 

  57. 57.

    Manber R, Simpson NS, Bootzin RR. A step towards stepped care: delivery of CBT-I with reduced clinician time. Sleep Med Rev. 2015;19:3–5.

    PubMed  Article  Google Scholar 

  58. 58.

    Austin S, Ramamonjiarivelo Z, Qu H, Ellis-Griffith G. Acupuncture use in the United States: who, where, why, and at what price? Health Mark Q. 2015;32(2):113–28.

    PubMed  Article  Google Scholar 

  59. 59.

    McKee MD, Nielsen A, Anderson B, Chuang E, Connolly M, Gao Q, et al. Individual vs. group delivery of acupuncture therapy for chronic musculoskeletal pain in urban primary care-a randomized trial. J Gen Intern Med. 2020;35(4):1227–37.

    PubMed  PubMed Central  Article  Google Scholar 

  60. 60.

    Chuang E, Hashai N, Buonora M, Gabison J, Kligler B, McKee MD. “It’s Better in a Group Anyway”: patient experiences of group and individual acupuncture. J Altern Complement Med. 2018;24(4):336–42.

    PubMed  PubMed Central  Article  Google Scholar 

  61. 61.

    Gehrman P, Shah MT, Miles A, Kuna S, Godleski L. Feasibility of group cognitive-behavioral treatment of insomnia delivered by clinical video telehealth. Telemed J E Health. 2016;22(12):1041–6.

    PubMed  Article  Google Scholar 

  62. 62.

    McCurry SM, Guthrie KA, Morin CM, Woods NF, Landis CA, Ensrud KE, et al. Telephone-based cognitive behavioral therapy for insomnia in perimenopausal and postmenopausal women with vasomotor symptoms: a MsFLASH randomized clinical trial. JAMA Intern Med. 2016;176(7):913–20.

    PubMed  PubMed Central  Article  Google Scholar 

  63. 63.

    Garland SN, Roscoe JA, Heckler CE, Barilla H, Gehrman P, Findley JC, et al. Effects of armodafinil and cognitive behavior therapy for insomnia on sleep continuity and daytime sleepiness in cancer survivors. Sleep Med. 2016;20:18–24.

    PubMed  Article  Google Scholar 

  64. 64.

    Zachariae R, Amidi A, Damholdt MF, Clausen CDR, Dahlgaard J, Lord H, et al. Internet-delivered cognitive-behavioral therapy for insomnia in breast cancer survivors: a randomized controlled trial. J Natl Cancer Inst. 2018;110(8):880–7.

    PubMed  PubMed Central  Article  Google Scholar 

  65. 65.

    Buenaver LF, Townsend D, Ong JC. Delivering cognitive behavioral therapy for insomnia in the real world: considerations and controversies. Sleep Med Clin. 2019;14(2):275–81.

    PubMed  Article  Google Scholar 

  66. 66.

    Fan AY, Stumpf SH, Faggert Alemi S, Matecki A. Distribution of licensed acupuncturists and educational institutions in the United States at the start of 2018. Complement Ther Med. 2018;41:295–301.

    PubMed  Article  Google Scholar 

  67. 67.

    Saper R. Integrative medicine and health disparities. Glob Adv Health Med. 2016;5(1):5–8.

    PubMed  PubMed Central  Article  Google Scholar 

  68. 68.

    Sherman KJ, Cherkin DC, Eisenberg DM, Erro J, Hrbek A, Deyo RA. The practice of acupuncture: who are the providers and what do they do? Ann Fam Med. 2005;3(2):151–8.

    PubMed  PubMed Central  Article  Google Scholar 

  69. 69.

    Vogel AL, Hall KL. Creating the conditions for implementing team principles in cancer care. J Oncol Pract. 2016;12(11):964–9.

    PubMed  Article  Google Scholar 

  70. 70.

    Koffel E, Hagedorn H. Provider perspectives of implementation of an evidence-based insomnia treatment in Veterans Affairs (VA) primary care: barriers, existing strategies, and future directions. Implement Sci Commun. 2020;1(1):107.

    PubMed  PubMed Central  Article  Google Scholar 

Download references

Funding

This work was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award (EAIN-00059) and a by PCORI award (CER-1403-14292). It was also supported by funding Dr. Mao received from the Translational and Integrative Medicine Research Fund at Memorial Sloan Kettering Cancer Center. Dr. Mao is also supported in part by a National Institutes of Health/National Cancer Institute Cancer Center grant (grant number P30 CA008748).

Author information

Affiliations

Authors

Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Sheila N. Garland, Jun J. Mao, Philip Gehrman, Eugenie Spiguel, Jodi MacLeod, Desirée A.H. Walker, Betsy Glosik, Christina Seluzicki, and Frances K. Barg. The first draft of the manuscript was written by Sheila Garland and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Sheila N. Garland.

Ethics declarations

The Institutional Review Board of Memorial Sloan Kettering Cancer Center designated this study as exempt.

Disclaimer

The content does not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

Conflict of interest

Dr. Mao reports grants from Tibet Cheezheng Tibetan Medicine Co., Ltd. and Zhongke Health International LLC outside the submitted work.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Garland, S.N., Trevino, K., Liou, K.T. et al. Multi-stakeholder perspectives on managing insomnia in cancer survivors: recommendations to reduce barriers and translate patient-centered research into practice. J Cancer Surviv (2021). https://doi.org/10.1007/s11764-021-01001-1

Download citation

Keywords

  • Acupuncture
  • Cognitive behavioral therapy
  • CBT
  • Insomnia
  • Patient-centered
  • Dissemination
  • Implementation
  • Cancer
  • Integrative oncology