Skip to main content
Top

Open Access 11-03-2025 | Insomnia Disorders | Review

A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies

Authors: Kyle Riedmann, Sean Gay, Sarah Averill Lott, Jonathan Berent, Derek L. Buhl, Joseph M. Dzierzewski, Nina Shaafi Kabiri, Frank Kramer, Michael Kremliovsky, Christian Seitz, Dries Testelmans, Kevin Thomas, Herman de Vries, Piper Fromy

Published in: Quality of Life Research

Login to get access

Abstract

Background

Sleep, a vital pillar of health, impacts daily functioning and overall quality of life. Despite extensive research on sleep disturbances within specific therapeutic areas (TAs), there's limited understanding of how these disturbances affect patients across multiple TAs. This systematic literature review adopts a patient-centered approach to explore the meaningful aspects of health and concepts of interest relating to sleep and sleep disturbances across a variety of TAs, utilizing qualitative research to bridge the gap between patient experiences and clinical measures.

Methods

A systematic search was conducted in Embase and PubMed for qualitative studies on sleep within selected TAs, using a pre-registered strategy. Initial screenings based on titles and abstracts were followed by full-text reviews and quality appraisal using the CASP checklist.

Results

From 4331 unique publications, 52 full-text articles were analyzed across 11 TAs. Thematic analysis highlighted issues within the sleep window, and proximal and distal impacts of sleep disturbances. Using thematic analysis a conceptual model was developed, illustrating a multitude of sleep disturbances from a patient-first perspective, which emphasized sleep quality's role in daily functionality.

Discussion

This review emphasizes the importance of incorporating patient perspectives into sleep research and clinical practice. By presenting a holistic conceptual model, it provides a foundation for developing outcome measures that reflect meaningful aspects of patients' sleep experiences. This patient-centered approach highlights the need for novel methodologies in sleep research, beyond traditional clinical outcome assessments, to capture the full spectrum of sleep disturbances' impacts on patients' lives across various TAs.
Literature
12.
go back to reference Schubach, K., Niyonsenga, T., Turner, M., & Paterson, C. (2024). Identifying the supportive care needs of people affected by non-muscle invasive bladder cancer: An integrative systematic review. Journal of Cancer Survivorship : Research and Practice. https://doi.org/10.1007/S11764-024-01558-7 Schubach, K., Niyonsenga, T., Turner, M., & Paterson, C. (2024). Identifying the supportive care needs of people affected by non-muscle invasive bladder cancer: An integrative systematic review. Journal of Cancer Survivorship : Research and Practice. https://​doi.​org/​10.​1007/​S11764-024-01558-7
14.
go back to reference Amir-Behghadami, M., & Janati, A. (2020). Population, Intervention, Comparison, Outcomes and Study (PICOS) design as a framework to formulate eligibility criteria in systematic reviews. Emergency Medicine Journal. Amir-Behghadami, M., & Janati, A. (2020). Population, Intervention, Comparison, Outcomes and Study (PICOS) design as a framework to formulate eligibility criteria in systematic reviews. Emergency Medicine Journal.
15.
go back to reference Higgins JP, Green S. Cochrane handbook for systematic reviews of interventions. Vol 4: John Wiley & Sons, 2011. Higgins JP, Green S. Cochrane handbook for systematic reviews of interventions. Vol 4: John Wiley & Sons, 2011.
18.
go back to reference Haighton, C., Watson, R. M., Wilson, J. A., & Powell, S. (2022). Perspectives on paediatric sleep-disordered breathing in the UK: A qualitative study. The Journal of Laryngology & Otology, 136(6), 520–526.CrossRef Haighton, C., Watson, R. M., Wilson, J. A., & Powell, S. (2022). Perspectives on paediatric sleep-disordered breathing in the UK: A qualitative study. The Journal of Laryngology & Otology, 136(6), 520–526.CrossRef
19.
go back to reference Masakane, I., Ito, M., Tanida, H., & Nawano, T. (2023). Patient-Centered Care Could Improve Quality of Life and Survival of Dialysis Patients: Dialysis Prescription and Daily Practice. Blood Purification, 52(Suppl 1). https://doi.org/10.1159/000526995 Masakane, I., Ito, M., Tanida, H., & Nawano, T. (2023). Patient-Centered Care Could Improve Quality of Life and Survival of Dialysis Patients: Dialysis Prescription and Daily Practice. Blood Purification, 52(Suppl 1). https://​doi.​org/​10.​1159/​000526995
24.
go back to reference Goldsack, J. C., Coravos, A., Bakker, J. P., Bent, B., Dowling, A. V., Fitzer-Attas, C., Godfrey, A., Godino, J. G., Gujar, N., Izmailova, E., Manta, C., Peterson, B., Vandendriessche, B., Wood, W. A., Wang, K. W., & Dunn, J. (2020). Verification, analytical validation, and clinical validation (V3): the foundation of determining fit-for-purpose for Biometric Monitoring Technologies (BioMeTs). Npj Digital Medicine, 3(1), 1–15. https://doi.org/10.1038/s41746-020-0260-4CrossRef Goldsack, J. C., Coravos, A., Bakker, J. P., Bent, B., Dowling, A. V., Fitzer-Attas, C., Godfrey, A., Godino, J. G., Gujar, N., Izmailova, E., Manta, C., Peterson, B., Vandendriessche, B., Wood, W. A., Wang, K. W., & Dunn, J. (2020). Verification, analytical validation, and clinical validation (V3): the foundation of determining fit-for-purpose for Biometric Monitoring Technologies (BioMeTs). Npj Digital Medicine, 3(1), 1–15. https://​doi.​org/​10.​1038/​s41746-020-0260-4CrossRef
25.
go back to reference Ong, J. C., Crawford, M. R., Kong, A., Park, M., Cvengros, J. A., Crisostomo, M. I., Alexander, E. I., & Wyatt, J. K. (2017). Management of obstructive sleep Apnea and Comorbid Insomnia: A mixed-methods evaluation. Behavioral Sleep Medicine, 15(3), 180–197.CrossRefPubMed Ong, J. C., Crawford, M. R., Kong, A., Park, M., Cvengros, J. A., Crisostomo, M. I., Alexander, E. I., & Wyatt, J. K. (2017). Management of obstructive sleep Apnea and Comorbid Insomnia: A mixed-methods evaluation. Behavioral Sleep Medicine, 15(3), 180–197.CrossRefPubMed
26.
go back to reference Ahonen, H., Broström, A., Fransson, E. I., Neher, M., & Lindmark, U. (2022). The terrible dryness woke me up, I had some trouble breathing-Critical situations related to oral health as described by CPAP-treated persons with obstructive sleep apnea. Journal of Sleep Research, 31(6), e1.CrossRef Ahonen, H., Broström, A., Fransson, E. I., Neher, M., & Lindmark, U. (2022). The terrible dryness woke me up, I had some trouble breathing-Critical situations related to oral health as described by CPAP-treated persons with obstructive sleep apnea. Journal of Sleep Research, 31(6), e1.CrossRef
27.
go back to reference Broström, A., Johansson, P., Strömberg, A., Albers, J., Mårtensson, J., & Svanborg, E. (2007). Obstructive sleep apnoea syndrome–patients’ perceptions of their sleep and its effects on their life situation. Journal of Advanced Nursing, 57(3), 318–327.CrossRefPubMed Broström, A., Johansson, P., Strömberg, A., Albers, J., Mårtensson, J., & Svanborg, E. (2007). Obstructive sleep apnoea syndrome–patients’ perceptions of their sleep and its effects on their life situation. Journal of Advanced Nursing, 57(3), 318–327.CrossRefPubMed
28.
go back to reference Chou, M. S. H., Ting, N. C. H., El-Turk, N., Harrington, Z., & Dobler, C. C. (2021). Treatment burden experienced by patients with obstructive sleep apnoea using continuous positive airway pressure therapy. PLoS ONE, 16(6), e0252915.CrossRefPubMedPubMedCentral Chou, M. S. H., Ting, N. C. H., El-Turk, N., Harrington, Z., & Dobler, C. C. (2021). Treatment burden experienced by patients with obstructive sleep apnoea using continuous positive airway pressure therapy. PLoS ONE, 16(6), e0252915.CrossRefPubMedPubMedCentral
29.
go back to reference Davies, K., Lin, Y. L., Glenny, A. M., Callery, P., & Bruce, I. A. (2019). Parental Experience of Sleep-Disordered Breathing in Infants With Cleft Palate: Comparing Parental and Clinical Priorities. The Cleft palate-craniofacial journal: official publication Davies, K., Lin, Y. L., Glenny, A. M., Callery, P., & Bruce, I. A. (2019). Parental Experience of Sleep-Disordered Breathing in Infants With Cleft Palate: Comparing Parental and Clinical Priorities. The Cleft palate-craniofacial journal: official publication
30.
go back to reference Henry, D., & Rosenthal, L. (2013). “Listening for his breath:” The significance of gender and partner reporting on the diagnosis, management, and treatment of obstructive sleep apnea. Social science & medicine, 79, 48–56.CrossRef Henry, D., & Rosenthal, L. (2013). “Listening for his breath:” The significance of gender and partner reporting on the diagnosis, management, and treatment of obstructive sleep apnea. Social science & medicine, 79, 48–56.CrossRef
31.
go back to reference Hu, S. T., Yu, C. C., Lee, P. S., & Tsao, L. I. (2014). Life experiences among obstructive sleep apnoea patients receiving continuous positive airway pressure therapy. Journal of clinical nursing, 23(1–2), 268–278.CrossRefPubMed Hu, S. T., Yu, C. C., Lee, P. S., & Tsao, L. I. (2014). Life experiences among obstructive sleep apnoea patients receiving continuous positive airway pressure therapy. Journal of clinical nursing, 23(1–2), 268–278.CrossRefPubMed
32.
go back to reference Luyster, F. S., Dunbar-Jacob, J., Aloia, M. S., Martire, L. M., Buysse, D. J., & Strollo, P. J. (2016). Patient and Partner Experiences With Obstructive Sleep Apnea and CPAP Treatment: A Qualitative Analysis. Behavioral Sleep Medicine, 14(1), 67–84.CrossRefPubMed Luyster, F. S., Dunbar-Jacob, J., Aloia, M. S., Martire, L. M., Buysse, D. J., & Strollo, P. J. (2016). Patient and Partner Experiences With Obstructive Sleep Apnea and CPAP Treatment: A Qualitative Analysis. Behavioral Sleep Medicine, 14(1), 67–84.CrossRefPubMed
34.
go back to reference Ye, L., Antonelli, M. T., Willis, D. G., Kayser, K., Malhotra, A., & Patel, S. R. (2017). Couples’ experiences with continuous positive airway pressure treatment: A dyadic perspective. Sleep Health, 3(5), 362–367.CrossRefPubMedPubMedCentral Ye, L., Antonelli, M. T., Willis, D. G., Kayser, K., Malhotra, A., & Patel, S. R. (2017). Couples’ experiences with continuous positive airway pressure treatment: A dyadic perspective. Sleep Health, 3(5), 362–367.CrossRefPubMedPubMedCentral
35.
go back to reference Seiger Cronfalk, B., Åkesson, E., Nygren, J., Nyström, A., Strandell, A. M., Ruas, J., & von Euler, M. (2020). A qualitative study—Patient experience of tactile massage after stroke. Nursing open, 7(5), 1446–1452.CrossRefPubMedPubMedCentral Seiger Cronfalk, B., Åkesson, E., Nygren, J., Nyström, A., Strandell, A. M., Ruas, J., & von Euler, M. (2020). A qualitative study—Patient experience of tactile massage after stroke. Nursing open, 7(5), 1446–1452.CrossRefPubMedPubMedCentral
37.
go back to reference Young, C. A., Mills, R. J., Gibbons, C., & Thornton, E. W. (2013). Poststroke fatigue: The patient perspective. Topics in stroke rehabilitation, 20(6), 478–484.CrossRefPubMed Young, C. A., Mills, R. J., Gibbons, C., & Thornton, E. W. (2013). Poststroke fatigue: The patient perspective. Topics in stroke rehabilitation, 20(6), 478–484.CrossRefPubMed
38.
go back to reference Wade, R., Pachana, N. A., Mellick, G., & Dissanayaka, N. (2020). Factors related to sleep disturbances for individuals with Parkinson’s disease: A regional perspective. International Psychogeriatrics, 32(7), 827–838.CrossRefPubMed Wade, R., Pachana, N. A., Mellick, G., & Dissanayaka, N. (2020). Factors related to sleep disturbances for individuals with Parkinson’s disease: A regional perspective. International Psychogeriatrics, 32(7), 827–838.CrossRefPubMed
41.
go back to reference Hsu, H. C., Chen, N. H., Jou, H. J., An, C., & Tsao, L. I. (2009). Sleep disturbance experiences among perimenopausal women in Taiwan. Journal of Clinical Nursing, 18(15), 2116–2124.CrossRefPubMed Hsu, H. C., Chen, N. H., Jou, H. J., An, C., & Tsao, L. I. (2009). Sleep disturbance experiences among perimenopausal women in Taiwan. Journal of Clinical Nursing, 18(15), 2116–2124.CrossRefPubMed
42.
go back to reference Vigeta, S. M. G., Hachul, H., Tufik, S., & de Oliveira, E. M. (2012). Sleep in postmenopausal women. Qualitative Health Research, 22(4), 466–475.CrossRefPubMed Vigeta, S. M. G., Hachul, H., Tufik, S., & de Oliveira, E. M. (2012). Sleep in postmenopausal women. Qualitative Health Research, 22(4), 466–475.CrossRefPubMed
44.
go back to reference Berkley, A. S., Carter, P. A., Yoder, L. H., Acton, G., & Holahan, C. K. (2020). The effects of insomnia on older adults’ quality of life and daily functioning: A mixed-methods study. Geriatric Nursing, 41(6), 832–838.CrossRefPubMed Berkley, A. S., Carter, P. A., Yoder, L. H., Acton, G., & Holahan, C. K. (2020). The effects of insomnia on older adults’ quality of life and daily functioning: A mixed-methods study. Geriatric Nursing, 41(6), 832–838.CrossRefPubMed
45.
go back to reference Carey, T. J., Moul, D. E., Pilkonis, P., Germain, A., & Buysse, D. J. (2005). Focusing on the experience of insomnia. Behavioral sleep medicine, 3(2), 73–86.CrossRefPubMed Carey, T. J., Moul, D. E., Pilkonis, P., Germain, A., & Buysse, D. J. (2005). Focusing on the experience of insomnia. Behavioral sleep medicine, 3(2), 73–86.CrossRefPubMed
46.
go back to reference Cheung, J. M., Saini, B., Bartlett, D. J., Laba, T. L., & Mason, P. H. (2017). Mapping the illness trajectories of insomnia: A biographical disruption? Sociology of Health & Illness, 39(5), 659–679.CrossRef Cheung, J. M., Saini, B., Bartlett, D. J., Laba, T. L., & Mason, P. H. (2017). Mapping the illness trajectories of insomnia: A biographical disruption? Sociology of Health & Illness, 39(5), 659–679.CrossRef
48.
go back to reference Hiller, R. M., Lovato, N., Gradisar, M., Oliver, M., & Slater, A. (2014). Trying to fall asleep while catastrophising: What sleep-disordered adolescents think and feel. Sleep Medicine, 15(1), 96–103.CrossRefPubMed Hiller, R. M., Lovato, N., Gradisar, M., Oliver, M., & Slater, A. (2014). Trying to fall asleep while catastrophising: What sleep-disordered adolescents think and feel. Sleep Medicine, 15(1), 96–103.CrossRefPubMed
52.
go back to reference Andrews, L. K., Coviello, J., Hurley, E., Rose, L., & Redeker, N. S. (2013). “I’d eat a bucket of nails if you told me it would help me sleep:” Perceptions of insomnia and its treatment in patients with stable heart failure. Heart & lung, 42(5), 339–345.CrossRef Andrews, L. K., Coviello, J., Hurley, E., Rose, L., & Redeker, N. S. (2013). “I’d eat a bucket of nails if you told me it would help me sleep:” Perceptions of insomnia and its treatment in patients with stable heart failure. Heart & lung, 42(5), 339–345.CrossRef
55.
go back to reference DiFusco, L. A., Saylor, J. L., & Schell, K. A. (2020). Maternal experiences of caring for a child with a ventricular assist device. Pediatric Transplantation, 24(1), e13620.CrossRefPubMed DiFusco, L. A., Saylor, J. L., & Schell, K. A. (2020). Maternal experiences of caring for a child with a ventricular assist device. Pediatric Transplantation, 24(1), e13620.CrossRefPubMed
56.
go back to reference Gullvåg, M., Gjeilo, K. H., Fålun, N., Norekvål, T. M., Mo, R., & Broström, A. (2019). Sleepless nights and sleepy days: A qualitative study exploring the experiences of patients with chronic heart failure and newly verified sleep-disordered breathing. Scandinavian Journal of Caring Sciences, 33(3), 750–759. https://doi.org/10.1111/scs.12672CrossRefPubMed Gullvåg, M., Gjeilo, K. H., Fålun, N., Norekvål, T. M., Mo, R., & Broström, A. (2019). Sleepless nights and sleepy days: A qualitative study exploring the experiences of patients with chronic heart failure and newly verified sleep-disordered breathing. Scandinavian Journal of Caring Sciences, 33(3), 750–759. https://​doi.​org/​10.​1111/​scs.​12672CrossRefPubMed
57.
go back to reference Inyom, C., Haese, T., Schoenrath, F., Potapov, E., & Knierim, J. (2022). Lived experiences of patients implanted with left ventricular assist devices. Heart & Lung, 55, 155–161.CrossRef Inyom, C., Haese, T., Schoenrath, F., Potapov, E., & Knierim, J. (2022). Lived experiences of patients implanted with left ventricular assist devices. Heart & Lung, 55, 155–161.CrossRef
58.
go back to reference Bitew, T., Keynejad, R., Honikman, S., Sorsdahl, K., Myers, B., Fekadu, A., & Hanlon, C. (2020). Stakeholder perspectives on antenatal depression and the potential for psychological intervention in rural Ethiopia: a qualitative study. BMC Pregnancy and Childbirth, 20 Bitew, T., Keynejad, R., Honikman, S., Sorsdahl, K., Myers, B., Fekadu, A., & Hanlon, C. (2020). Stakeholder perspectives on antenatal depression and the potential for psychological intervention in rural Ethiopia: a qualitative study. BMC Pregnancy and Childbirth, 20
59.
go back to reference Conroy, D. A., Czopp, A. M., Dore-Stites, D., Dopp, R. R., Armitage, R., Hoban, T. F., & Arnedt, J. T. (2017). A pilot study on adolescents with depression and insomnia: Qualitative findings from focus groups. Behavioral Sleep Medicine, 15(1), 22–38.CrossRefPubMed Conroy, D. A., Czopp, A. M., Dore-Stites, D., Dopp, R. R., Armitage, R., Hoban, T. F., & Arnedt, J. T. (2017). A pilot study on adolescents with depression and insomnia: Qualitative findings from focus groups. Behavioral Sleep Medicine, 15(1), 22–38.CrossRefPubMed
60.
go back to reference Gebara, M. A., DiNapoli, E. A., Hamm, M. E., Rodriguez, K. L., Kasckow, J. W., Lederer, L. G., & Karp, J. F. (2020) Illness narratives and preferences for treatment among older veterans living with treatment-resistant depression and insomnia. Annals of clinical psychiatry: official journal of the American Academy of Clinical Psychiatrists, 32(2), 81 Gebara, M. A., DiNapoli, E. A., Hamm, M. E., Rodriguez, K. L., Kasckow, J. W., Lederer, L. G., & Karp, J. F. (2020) Illness narratives and preferences for treatment among older veterans living with treatment-resistant depression and insomnia. Annals of clinical psychiatry: official journal of the American Academy of Clinical Psychiatrists32(2), 81
61.
go back to reference Jernslett, M., Thackeray, L., Orchard, F., & Midgley, N. (2021). The experience of sleep problems for adolescents with depression in short-term psychological therapy. Clinical Child Psychology and Psychiatry, 26(4), 938–953.CrossRefPubMed Jernslett, M., Thackeray, L., Orchard, F., & Midgley, N. (2021). The experience of sleep problems for adolescents with depression in short-term psychological therapy. Clinical Child Psychology and Psychiatry, 26(4), 938–953.CrossRefPubMed
65.
go back to reference Montie, K., Quaedackers, L., Perlitius, V., van der Horst, E., Vandenbussche, N., Overeem, S., & Pillen, S. (2019). The impact of delayed sleep phase disorder on adolescents and their family. Sleep Medicine, 64, 15–22.CrossRefPubMed Montie, K., Quaedackers, L., Perlitius, V., van der Horst, E., Vandenbussche, N., Overeem, S., & Pillen, S. (2019). The impact of delayed sleep phase disorder on adolescents and their family. Sleep Medicine, 64, 15–22.CrossRefPubMed
66.
go back to reference Ose, S. O., Tjønnås, M. S., Kaspersen, S. L., & Færevik, H. (2019). One-year trial of 12-hour shifts in a non-intensive care unit and an intensive care unit in a public hospital: A qualitative study of 24 nurses’ experiences. British Medical Journal Open, 9(7), e024292. Ose, S. O., Tjønnås, M. S., Kaspersen, S. L., & Færevik, H. (2019). One-year trial of 12-hour shifts in a non-intensive care unit and an intensive care unit in a public hospital: A qualitative study of 24 nurses’ experiences. British Medical Journal Open, 9(7), e024292.
67.
go back to reference Anna Chen, Arpita Parmar, Tanvi Naik, Crystal Hutchinson, Lucy Frankel, Allison Zweerink, Brian J. Murray, Alene Toulany & Indra Narang (2022) Living with narcolepsy during adolescence: A qualitative study. Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 6(3), 161–168 Anna Chen, Arpita Parmar, Tanvi Naik, Crystal Hutchinson, Lucy Frankel, Allison Zweerink, Brian J. Murray, Alene Toulany & Indra Narang (2022) Living with narcolepsy during adolescence: A qualitative study. Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 6(3), 161–168
68.
go back to reference Franceschini, C., Fante, C., Folli, M. C., Filosa, M., Pizza, F., Antelmi, E., & Plazzi, G. (2020). Giving a voice to cataplectic experience: Recollections from patients with narcolepsy type 1. Journal of Clinical Sleep Medicine, 16(4), 597–603.CrossRefPubMedPubMedCentral Franceschini, C., Fante, C., Folli, M. C., Filosa, M., Pizza, F., Antelmi, E., & Plazzi, G. (2020). Giving a voice to cataplectic experience: Recollections from patients with narcolepsy type 1. Journal of Clinical Sleep Medicine, 16(4), 597–603.CrossRefPubMedPubMedCentral
71.
go back to reference Wehrle, R., & Bruck, D. (2011). Growing up with narcolepsy: Consequences for adolescents and young adults. Somnologie-Schlafforschung und Schlafmedizin, 15(1), 32–38.CrossRef Wehrle, R., & Bruck, D. (2011). Growing up with narcolepsy: Consequences for adolescents and young adults. Somnologie-Schlafforschung und Schlafmedizin, 15(1), 32–38.CrossRef
74.
go back to reference Picchietti, D. L., Arbuckle, R. A., Abetz, L., Durmer, J. S., Ivanenko, A., Owens, J. A., Croenlein, J., Allen, R. P., & Walters, A. S. (2011). Pediatric restless legs syndrome: analysis of symptom descriptions and drawings. Journal of Child Neurology, 26(11), 1365–1376.CrossRefPubMed Picchietti, D. L., Arbuckle, R. A., Abetz, L., Durmer, J. S., Ivanenko, A., Owens, J. A., Croenlein, J., Allen, R. P., & Walters, A. S. (2011). Pediatric restless legs syndrome: analysis of symptom descriptions and drawings. Journal of Child Neurology, 26(11), 1365–1376.CrossRefPubMed
Metadata
Title
A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies
Authors
Kyle Riedmann
Sean Gay
Sarah Averill Lott
Jonathan Berent
Derek L. Buhl
Joseph M. Dzierzewski
Nina Shaafi Kabiri
Frank Kramer
Michael Kremliovsky
Christian Seitz
Dries Testelmans
Kevin Thomas
Herman de Vries
Piper Fromy
Publication date
11-03-2025
Publisher
Springer New York
Published in
Quality of Life Research
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-025-03932-z