A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies
Auteurs:
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
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.
Opmerkingen
Kyle Riedmann and Sean Gay are Co-first authors.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Introduction and background
Sleep is an essential pillar of health and is vital for day-to-day functioning and life. According to the Center for Disease Control and Prevention, 1 in 3 adults in the general public report not getting enough sleep. A single night of inadequate sleep can cause measurable cognitive and general functioning deficits [1, 2]. Furthermore, chronic insufficient sleep is linked to a broad range of diseases and disorders [3‐5]. Many recent studies have begun to investigate the connection between sleep disruption presentation and disease.
Polysomnography (PSG) is the primary diagnostic tool for various sleep conditions and diseases [6, 7]. Analysis of PSG has characterized how aspects of sleep, such as rapid eye movement (REM) and non-REM (NREM) sleep, are affected by diseases and disorders. However, PSG has many limitations, such as, limited recording duration, costly, typically clinic-based, and may impact sleep quality. Recently, many digital tools have emerged that enable measurements of sleep in the home environment [8, 9]. However, there is a disconnect between the data acquired by digital health technologies (DHTs) for sleep and what is meaningful to patients. To promote research and care delivery to patients that better address their concerns with sleep, it is important to examine the elements of sleep disturbance that are important for measurement from the patient perspective and experience.
In this systematic literature review we summarize first-person accounts of patients’ and care partners sleep disturbance concerns across 11 therapeutic areas (TAs): Circadian Rhythm Disorders, Hypersomnolence, Parasomnias, Insomnia, Sleep related breathing disorders, Heart failure, Arrhythmia, Stroke, Depression, Menopause, and Parkinson’s Disease. Sleep disorders were chosen due to central sleep problems, but we also focused on sleep-associated TAs. These associated TAs often have secondary sleep disturbances due to symptoms of the disease such as: vasomotor issues in menopause, difficulty breathing in heart failure, and insomnia caused by depression [10]. This review fills a gap in identifying common aspects of sleep disturbance across TAs that could be the target of person-centered digital measurement. Previous reviews of qualitative research focused on a specific TA (bladder cancer, insomnia) or were mostly focused on nurses [11‐13]. The goal of this review is to identify key patient-relevant sleep and sleep disturbance issues across the TAs using literature-based quotes that describe how these sleep issues affect patients in the short and long term. We use this evidence to generate a conceptual model of sleep and sleep disturbances across the TAs. Future use of this conceptual model could guide the development of novel patient centric DHTs for clinical use and delivery of care for a broad range of diseases and disorders.
Methods
Search Strategy
We conducted a systematic search of qualitative original peer-reviewed articles containing “sleep” MESH terms in the title or abstract in each of the chosen therapeutic areas in Embase and PubMed using a pre-registered search strategy (PROSPERO ID = 432,662; Online Resource 1). The search was conducted in July 2023 and included articles published between 2003 and 2023 in any language through PubMed and Embase. A top-up search including articles between July 2023 and September 2024 was conducted to ensure results were up to date at the time of publication. Non-English articles were translated into English, or a translated version was offered from the publisher.
Screening
The titles and abstracts were initially screened by four members of the author group (SG, KR, SL, PF) using the PICO (Patient, Intervention, Comparison, Outcome) framework (Table 1) [14, 15]. All records were screened initially by two reviewers. Upon disagreement for inclusion, a third reviewer was asked to review the record, this occurred 8 times. All records with agreement from two reviewers proceeded to a full text screening.
Table 1
The PICOS Framework used in the systematic review
Participants
1. Exclude papers that do not report data from human participants
2. Exclude papers that do not report one or both of:
a. Participants representing the relevant condition of interest.a
b. Participants representing the caregiver of a person living with the condition of interesta
Intervention
N/A
Comparator
N/A
Outcome/s
3. Exclude papers that do not report on qualitative data regarding one or more aspects of sleep and/or sleep disturbance
Study design
4. Exclude papers based on studies that do not report prospectively-collected data
aParkinson's disease, menopause, depression, atrial fibrillation, heart failure, stroke, or any primary sleep disorder
During the full text portion of the screening, reviewers assessed the articles for continued relevance. If relevant, the Critical Appraisal Skills Program (CASP) checklist for qualitative research was applied [16]. CASP quality appraisals address the focus of the study, appropriateness of qualitative methods, proper experimental design and participant recruitment, ethical concerns, outcome reporting, and rigorous data analysis. If the study was rejected, the reason for the rejection was made in a tracking document (Online Resource 2). The most common deviation from the CASP questions was whether the relationship between researchers and participants was assessed to which many studies did not include. We believe this didn’t affect the validity of the studies and highlights the need for future studies to include this information.
Thematic analysis
Articles selected from screening were coded by four reviewers (SG, KR, SL, PF) using a thematic analysis approach [17]. This process included familiarization with the data through an initial reading of the publications, generating initial codes, collating the codes and developing themes and concepts, reviewing the themes and concepts, defining and naming themes and concepts and creating a conceptual model. The primary focus was on coding participant quotes, while relevant sections of authors' result interpretations were also included.
To ensure consistency, eight articles were initially reviewed and coded by all reviewers. Results were discussed for alignment. Then, the primary author (SG) harmonized all codes with input from other reviewers. Additional patient characteristics such as sample size, % female, average age, and sample characteristics were recorded and presented in Table 3.
To define the themes, codes were extracted into an online workspace [18] and quotes were extracted to a searchable database (Online Resource 3). The author team reviewed the extracted codes, associated quotes and original articles to group codes into themes. This was led by two authors (PG, SG) with substantial input from the remaining authors. Themes were identified and assigned names. Concepts were derived from the associated code groups, with reference to the original text and quote database. A conceptual model was developed and underwent two rounds of expert review from the author team and experts from the DiMe Core Digital Measures of Sleep team. This review was completed using the PRISMA 2020 checklist for systematic reviews (Online Resource 4).
Results
The search resulted in 4331 unique publications. The initial title screen reduced the total number of publications to 221. The DiMe Core Digital Measures of Sleep team completed an abstract screen, further reducing the total to 78 publications. These 78 publications were subject to a full text review and assessed using the CASP appraisal system. After the full text review and quality appraisal, 52 remained (Fig. 1, Table 2). The 52 full text articles were coded with Atlas.ti (Table 3). A total of 475 codes were created.
Fig. 1
Prisma Diagram of screened publications
Table 2
A breakdown of the retrieved and screened publications for each TA
Therapeutic area
Initial paper total (no duplicates)
Initial total after title and abstract screen
Reduced total after expert title and abstract screen
Number of papers included
Circadian Rhythm Disorders
121
12
3
3
Hypersomnolence
493
21
7
5
Parasomnias
462
12
6
3
Insomnia
746
49
15
11a
Sleep breathing related disorders
787
32
13
11a
Heart failure
42
13
8
6
Arrhythmia
17
2
1
0
Stroke
123
19
5
3
Depression
1147
19
8
6
Menopause
122
11
5
2
Parkinson’s Disease
271
21
7
3
All TAs combined
4331
211
78
52a
aOng [25] is both an insomnia and sleep breathing related disorders publication, therefore it is counted for both but only counted once in the total
Table 3
Summary of full text articles extracted for information
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
18
27.7%
73.5 (51–78)
Adults with long‐term experience of continuous Positive airway pressure‐treatment
"Like a Wave" in Its Variable Shape, Breadth, and Depth: A Qualitative Interview Study of Experiences of Daytime Sleepiness in People with Parkinson's Disease
12
71.4%
65
Five women and seven men (42–82 years) with PD for 1.5 to 21 years and excessive daytime sleepiness (i.e., a score of > 10 on the Epworth Sleepiness Scale)
Sleepless nights and sleepy days: a qualitative study exploring the experiences of patients with chronic heart failure and newly verified sleep‐disordered breathing
17
17.6%
60.4 (41–80)
14 men, 3 women diagnosed with chronic heart failure & verified sleep-disordered breathing (9 obstructive, 7 central, 1 mixed)
The impact of delayed sleep phase disorder on adolescents and their family
12
33%
14.7 ± 1.7
6 adolescents with circadian rhythm disorder type DSPD. Four boys, ages 13, 15, 15, 16. Two girls, ages 12, 17. 1 parent of each adolescent also interviewed
One-year trial of 12-h shifts in a non-intensive care unit and an intensive care unit in a public hospital: a qualitative study of 24 nurses’ experiences
24
100%
N/A
Female nurses working 12-h shifts, 16 in the Medical unit and 8 in the ICU for 1 year; no further demo. data
Pediatric restless legs syndrome: analysis of symptom descriptions and drawings
33
42%
11.2 ± 3.33
Children with RLS
1:1 interviews
USA
×
In order to create a conceptual model, the codes were grouped into themes and concepts. Concepts were attributed to three broad groups based on their proximity to the sleep window, defined as the period when an individual attempts to sleep. These included concepts relating directly to the sleep window, and two different types of impacts: 1) proximal impacts were immediately due to sleep disruption the night before and 2) distal impacts were due to accumulated effects of continued sleep disruption. Some distal impacts are thought to further impact sleep or cause sleep disruption. In line with the 3P model of insomnia that ascribes sleep disturbance to predisposing, precipitating, and perpetuating factors (Spielman, Caruso & Glovinsky, 1987), this latter subgroup of distal impacts were highlighted as perpetuating factors (Fig. 2). The risk of bias from missing results is minimal or not present due to the elimination of studies without quotes, which is the primary data extracted. In the following sections we describe each of the three broad groups created. Findings are displayed across TAs unless specified otherwise.
Fig. 2
A conceptual model of patient perspectives on sleep disruption and associated impacts across therapeutic areas
×
Sleep window issues
The literature review provided insight into issues that patients across TAs report as important in the sleep window. This includes both issues that prevent sleep and those that disrupt sleep once it is achieved. The concepts presented in the sleep window issues section of the conceptual model represent two broad categories: sleep issues experienced by the patient, and the impact of the patient's sleep issues on the bed partner or care partner.
Sleep quality
Sleep quality, as defined here, is not a single measurement of efficiency as it is used elsewhere. Rather, we focus on subjective sleep quality defined as the patient's reported feeling of being refreshed or restored by sleep. Many different aspects of sleep can impact subjective sleep quality, including sleep behaviors such as the time it takes to get to sleep, waking up in the night, sensory issues disturbing sleep and restless sleep. Despite no single aspect of sleep being a sole determinant of subjective sleep quality, the overarching concept of subjective sleep quality was found in this work to be important to patients across all therapeutic areas, even if it was not directly referred to as “sleep quality”.
“I felt that I could not inhale air, then I awoke, and my sleep was interrupted, impacting my sleep quality”—Patient, Sleep related breathing disorder, Hu et al., 2014
“…and it wasn't quality sleep, so, it's like you're not sleeping every night”—Patient, Sleep related breathing disorder, Luyster et al., 2016
“lousy terrible sleeper”—Patient, Heart failure, Andrews et al., 2013
“Sleep was poor or didn’t come at all”—Patient, Insomnia, Yung et al., 2015
“After you wake up you feel really lethargic, really tired! This is because you didn’t really sleep.”—Patient, Menopause, Hsu et al., 2009
Several specific meaningful aspects of health were found to lead to the described sleep quality issues. The first of these were symptoms, feelings, or general restlessness that prevented the individual from getting to sleep or returning to sleep if they woke up. These were typically either symptoms related to a sleep condition or a comorbid condition that led to sleep disturbance, or the individual being active in the sleep window because of the symptoms or simply because they couldn’t get back to sleep (leading to a vicious cycle).
“Just like a little—like bugs are crawling up, sometimes.’’ Child patient, Parasomnia, Piccietti et al., 2011
“You toss and turn, unable to sleep and you end up like this. Sometimes I get up as soon as I lie down” Patient, Menopause, (Hsu et al., 2009)
“Because that was a truly frightening experience. It was as if it was your last breath of air when you came up like that.” Patient, Heart failure(Gullvag et al., 2019)
“I put my clothes on; I take them off, and it really keeps me up. My sleep is chopped into pieces.” Patient, Menopause (2012, Vigeta)
Insufficient sleep
Another, related aspect impacting subjective sleep quality was insufficient sleep. This was either caused by a difficulty in achieving sleep (sleep onset latency) or feeling like sleep wasn't long enough to be restorative or, in rare cases, the perception that sleep was never achieved.
“You figure every half an hour I wasn't sleeping, because I was stopping breathing. So, instead of getting eight hours of sleep I was really getting four hours sleep”—Patient, Sleep related breathing disorder, Luyster et al., 2016
“…just four straight hours of sleep, then I think I would feel pretty good. Now I have to force myself out of bed.” Patient Heart failure (Andrews,2013)
“I feel exhausted, even after sleep … feel raving tired” Patient, Stroke (Young, 2015)
“when you wake up the next morning and you don’t even think about whether you slept or didn’t sleep, you just carried on” Patient, Insomnia (Klienman, 2013)
Sleep continuity issues
Many patients attributed insufficient sleep to sleep continuity issues. Patient quotes depicted a disruption to continuous sleep, which interrupts the cyclic nature of sleep. The cause of these disruptions have different, condition-related etiologies. Some relate to comorbid conditions that wake the individual up, and some relate to sleep disorder symptoms like hypnagogic hallucinations, but have the same impact—breaking up the time spent sleeping across the sleep period.
“I went to bed at 12:30, I was up at 1:30, then up again at three am and then four. I said the hell with it and I put the TV on.” Patient, Heart failure (Andrews, 2013)
“I go to bed at eleven and then probably sleep for a couple of hours before it starts. I usually wake up because I have to go to the bathroom” Patient, Sleep related breathing disorders (Bronstrom, 2007)
“I dreamt that one of my caseworkers, they were looking for her to kill her, and it was such a terrible dream… and then I woke up crying” Patient, Parasomnia (Jacobson, 2009)
Impacts on others
Finally, individuals who experienced sleep window issues negatively affected the sleep of their bed partner or care partner. These sleep disruptions primarily occurred in the sleep breathing disorders and heart failure TAs and had two causes: 1) bed or care partner sleep was directly disrupted through noisy breathing or snoring, or 2) indirect sleep disruption caused by stress or concern over a behavior or symptom of their sick partner.
“He coughs a lot at night and has to sit up and complains that he cannot breathe. Of course then I wake up too” Partner, Heart failure (Bronstrom, 2003)
“It wasn't good for us. We were still newlyweds and we weren't even able to sleep in the same room together. I couldn't take it—I was staying up all night, I had insomnia because I was listening to him.” Partner, Sleep breathing related disorders (Luyster, 2016)
“For me it seems like this has affected her almost more than it has affected me. Because she has been lying awake and has heard me breathe in, and then it has stopped.” Patient talking about bed partner, Heart failure (Gullvag, 2019)
Non sleep window issues (proximal impacts)
The proximal impacts of poor quality sleep on the next day's functioning fell into three broad categories: difficulties upon waking, difficulties during the day, and coping behaviors to deal with the impacts of sleep disruption.
Difficulties upon waking
Difficulties upon waking included sleep inertia (feeling tired upon waking) which was experienced broadly across therapeutic areas:
“After you wake up you feel really lethargic, really tired!” Patient, Menopause (Hsu, 2009)
“the worse part I think is getting up in a morning. It takes me ages. I think it’s the tiredness that affects me most.” Patient, Heart Disease (Barnes, 2006)
Oversleeping because of a poor night's sleep and concerns about physical appearance upon waking were not reported often. Oversleeping was restricted to depression and also included the feeling of not wanting to wake up, and appearance issues had different etiologies—some were related to not sleeping enough (insomnia), and some were related to wearing a CPAP mask (sleep breathing disorders).
“I used to cancel everything…I just wanted to sleep all the time because I knew that if I stayed awake I’d just feel sad, and I didn’t want to feel sad, so” Patient, depression (Jernslett, 2021)
There was some mention of hypnopompic hallucinations and sleep paralysis causing the individual to feel stuck in between wake and sleep, but this was restricted to the hypersomnolence therapeutic area.
“You’re mentally awake. Your brain’s telling your body to move and you just can’t” Patient, Hypersomnolence (Wehrle, 2011)
“you’re paralyzed for 20 min and you can’t move and sometimes it feels like you can’t breathe.” Patient, Hypersomnolence (Chen, 2022)
Difficulties during the day
Difficulties during the day related to diverse impacts, but were found to relate most often to the effects of sleep disturbances on cognition, emotion and ability to function in the waking hours.
Impaired cognitive function was hallmarked by reports from the literature of a general inability or reduced capacity to process information or learn new information, specifically driven by difficulty concentrating, memory difficulties and cognitive fatigue. These impacts manifested as further issues such as less engagement with activities of daily living.
“I’m tired when I’m at work, I can’t concentrate, I become sloppy which is bad. After I get home I don’t want to cook, nor do I want to do chores. My whole life rhythm is messed up.” Patient, Menopause (Hsu, 2009)
“I was really tired, couldn’t cope, couldn’t study late at night, couldn’t concentrate” Patient, Hypersomnolence (Wehrle, 2011)
“One participant indicated that it negatively affected his decision making, whereas another reported that his “short-term memory is shot.” One participant also reported, “I just can’t seem to concentrate right and I make stupid mistakes” Researcher summary, Insomnia (Kleinman, 2013)
There was an emphasis from the patient self-report that concentration, fatigue and memory difficulties were particularly pronounced at work and while driving due to the increased risk of mistakes and accidents.
“Having trouble in focusing and doing the work.” Patient, Circadian Rhythm Disorder (Bastille-Denis, 2020)
“impacts your workday, you're frustrated…I'm in charge of people, and I go and snap out on them at work because I'm tired” Patient, Sleep related breathing disorders (Luyster, 2016)
“I had three car accidents in six weeks. They were ALL my fault. Two of them I didn’t even know I was involved in until afterwards.” Patient, Sleep related breathing disorders (Henry, 2012)
As noted above in the patient quotes, the immediate impacts of sleep disturbance also include an emotional component. A lack of sleep was reported to increase frustration, reduce patience and lower mood. Patients reported reacting negatively towards others they worked with or whom they were normally cordial, such as family and friends. They also noted that this was completely out of character and driven by the effects of sleep disturbance.
“Feeling guilty, irritable or frustrated. Lacking patience, motivation or interest” Researcher summary, Circadian Rhythm (Bastille-Denis, 2020)
“Because when you do not sleep you get moody, for no reason. Even to my best friend, my parents…it would do like that (snaps fingers)” Patient, Sleep breathing related disorder (Rudolph, 2018)
“I’ll just be in that really cranky mood, and I don’t want to say something I’m going to regret” Patient, Hypersomnolence (Chen, 2022)
Finally, there were reports of unplanned napping from being overly tired in the day.
“You don’t know what’s happening with this situation. You don’t know what you said. … Certain times you’ll be dozing off and you’ll be saying some crazy stuff. When you wake up, people are mad at you.” Patient, Hypersomnolence (Chen, 2022)
“patients reported that they fell asleep despite their best effort not to do so” Researcher summary, Stroke (Young, 2015)
However, not all napping was incidental. Coping mechanisms were mentioned substantially across TAs, though some unsuccessful, and mainly involved intentional napping and caffeine consumption.
“Take a nap to refresh and restart my body and brain” Patient, Parkinson’s Disease (Hogland, 2022)
“Two participants without cataplexy consumed up to 15 cups of coffee per day” Researcher summary, Hypersomnolence (Wehrle, 2011)
Long term (distal) issues of sleep problems
Chronic sleep disruptions can have a long lasting impact on an individual’s life and health. In the conceptual model, this has been defined in two broad categories: long-term health and life problems and long term problems that lead to more sleep problems, referred to here as perpetuating factors.
Long term health and life problems
Overall, the long term health and life problems are encapsulated by the following quote, showing in the patient's own words the wide impact sleep disruption has.
“Because it’s [insomnia] built up over a week or so many years or whatever, it kind of grinds you down, it does affect every single part of your day::: and it’s not just a minor thing, it is something major which just, you know, it stops you from functioning daily.” Patient, Insomnia [75]
Patients reported that their mental health was impacted through issues such as depression, loneliness, and hopelessness. Social stigma, and an overall reduction in social life, a lack of support from peers and guilt from the long term impact of sleep disruption on others was found to arise from chronic issues with sleep. This leads to patients feeling like they were not understood by others around them and to subsequently withdraw from life.
“[People say:] I don’t think you have narcolepsy. I think you’re just tired.” Patient, Hypersomnolence (Ong, 2021)
“My friends don't understand, they tell me to just go to bed early and get a good night of sleep…It's frustrating because it's not my fault” Patient, Circadian Rhythm disorder (Montie, 2019)
“We had a lot of good friends before, several families that we spent time together with. He doesn't want to do that now… He’s often tired and sleeps more.” Partner, Heart failure (Bronstrom, 2003)
“They were able to “deal with it” by minimizing interactions with their clients and co-workers, using such tactics as not picking up the telephone, using caller ID to screen calls, or staying in their offices” Researcher summary, Insomnia (Kleinman, 2013)
Within the patients’ own lives, there was a severe reduction in their ability to achieve goals or be engaged. A chronic disruption to sleep prevented patients from achieving their life goals, leading to guilt and regrets about the direction their life had taken.
“I cannot keep up with developments and changes that are experienced by my friends or classmates … When I return to school, I seem to have missed out on everything” Patient, Circadian Rhythm disorder (Montie, 2019)
“I certainly have lots of regrets about my life and things that I haven’t done and haven’t achieved … if I could establish a sleep pattern again, I would take on a lot of challenges in my life, … I would definitely change a lot” Patient, Insomnia [75]
Perpetuating factors
Some long term impacts of disrupted sleep led to perpetuating factors that continued to reinforce the sleep disruption. Key concepts included patients’ thoughts and feelings surrounding falling asleep, such as thoughts of anxiety, fear, worry and concern about their inability to fall asleep. This ultimately prevented the patients from achieving sleep. These patients found ways of changing their routine to help aid sleep, although these methods were not always representative of good sleep hygiene.
“I’ve always thought I wished it was light all the time… I wished it didn’t stop at night you know because when the world stops, my head’s still going and my world’s still going and there's nobody there.” Patient, Depression (Littlewood, 2016)
worrying, I wake up and can't go back to sleep” Patient, Stroke (Cronfalk, 2020)
“I wait until I’m dead tired. I’m afraid of going to bed and I think this is a good way to cope with my situation” Patient, Sleep Breathing Disorder (Bronstrom, 2007)
Discussion
This systematic literature review presents a significant advancement in understanding patient-centric accounts of sleep and sleep disturbances across TAs. Our results are summarized in a holistic conceptual model of sleep and sleep disturbances. This work fills a gap in understanding common themes of sleep disturbance across TAs. Previous reviews of qualitative research have focused on a specific TA [11‐13]. These results set the foundation for selecting sleep-related outcomes for evaluation across many TAs, both using digital health technology and other measurement modalities where appropriate.
The conceptual model of sleep emphasizes patient perspectives, providing a robust framework for understanding sleep and its disturbances. Critically, this patient-centered approach enables researchers and clinicians to identify meaningful aspects of sleep experience that significantly impact patients' quality of life, going beyond the traditional lab-based assessments of sleep)[19, 20]. The model facilitates the integration of objective sleep measures that can target these concepts in clinical research and practice. Although PSG is the gold standard for sleep quantification,, this is removed from the patient experience of sleep in their naturalistic environment. Questionnaire data has previously been used to address important concepts that matter to patients [21]. These measures typically contain multiple items about sleep and sleep disturbance targeting a general underlying construct. Although for assessments of sleep quality, for example, subjective data will continue to have importance, DHTs can be implemented alongside questionnaires for a more comprehensive sleep measurement of single, meaningful aspects of sleep disturbance. DHTs generate objective sensor-based sleep data that can complement self-report data, while also targeting relevant concepts of interest in the natural environment [22, 23].. For example, the distal impacts in the presented conceptual model may be most appropriately measured using traditional COAs, whereas the sleep window issues could benefit from repeated assessment using digital health technologies.
The comparison between patients' views on sleep across the TAs underscores a critical insight: patients often perceive sleep quality not just in terms of quantity and consistency, but in how it affects their ability to engage in daily activities, emotional well-being, and overall health. This can be noted with patients' concerns with their performance at work or with family and loved ones. Such concerns as these merit a push for novel outlooks on how to quantify sleep quality, outside the gold standard PSG, to fully capture the implications of sleep disruption in a naturalistic environment.
The results here, though broad, only examine 11 TAs, many of which are sleep disorders. Additionally, the review focuses on systematic sleep disturbance issues across therapeutic areas, as opposed to focusing on individual differences between TAs. It is clear that some aspects are more pertinent to a given TA than others. Although these TAs were selected to offer an omni-therapeutic insight to sleep disturbance, adopters of this model may want to supplement this work through further assessment of the literature in their specific therapeutic area of focus to ensure the concepts are appropriate and prioritized for their own work.
To fully realize the potential that digital measurement can offer to sleep measurement, a consistent approach, specifying a set of digitally mature, core sleep measures is needed [24]. One way of accomplishing this is to build on existing recommendations, such as those arising from the National Sleep Foundation (American National Standards Institute/Consumer Technology Association/National Sleep Foundation; 2022). The work presented here contributes to that goal through identifying patient relevant concepts arising consistently across multiple TAs. A future direction using this work to inform core measures of sleep that are meaningful and can be assessed in a patient's home environment will help to standardize the field sleep and allow greater comparability between results.
Acknowledgements
The authors would like to acknowledge the technical and scientific contributions that Jessie Bakker gave to the project.
Declarations
Conflict of interest
The Authors have no relevant financial information to disclose.
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A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies
Auteurs
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