Initial Evaluation of an Electronic Sleep/Symptom Diary for Adults with Multiple Sclerosis.
Research suggests symptoms of fatigue and daytime sleepiness may be related to co-morbid sleep disorders which often are underdiagnosed in people with MS (Brass, Li, & Auerbach, 2014). Other symptoms, such as depression, pain (Amtmann et al., 2015), and anxiety, may accompany sleep disorders (Labuz-Roszak, Kubicka-Bczyk, Pierzchala, Machowska-Majchrzak, & Skrzypek, 2012). Management of symptoms impacting sleep in persons with MS is important because poor sleep is an independent predictor of adverse quality of life (Vitkovo et al., 2014).
Poor sleep in MS has many causes. Triggers may relate to effects of immunotherapy and to MS-associated symptoms, such as pain and fatigue (Boe Lunde et al., 2012; Leonavicuis & Adomaitiene, 2014). Over 50% of people with MS report symptoms interfere with their sleep. Sleep disturbances such as falling asleep and staying asleep were impacted by pain, spasticity, paresthesia, and bladder dysfunction (Pokryszko-Dragan et al., 2013).
Poor sleep hygiene may contribute to the development of sleep disturbances among people with MS. Sleep hygiene is defined as lifestyle habits known to improve nocturnal sleep and daytime alertness (Morin, Davidson, & Beaulieu-Bonneau, 2017). These activities include regular bed- and wake-times, participation in physical exercise, and limited fluids during the evening (see Table 1). Limiting fluid intake may be particularly important to people with MS because nocturia has been identified as a predominant cause of lack of sleep (Brass et al., 2014). A better understanding of additional contributing factors, particularly other involved symptoms, is needed to improve treatment of sleep disorders in MS. For people with MS, electronic methods such as electronic diaries (ED) may be an important means of gleaning information on symptoms and sleep habits.
A literature search was conducted in CINAHL, PubMed, and Scopus for English-language publications for 2006-2017 using the following key terms: sleep quality, sleep habits, symptoms and sleep, technology, and ED for people with MS. Review and pharmacological articles were removed, leaving six publications for review. Due to the limited data on ED, two studies also were included on use of email links to glean data (Amtmann et al., 2015; Newland et al., 2012).
Van Kessel, Babbage, Reay, Miner-Williams, and Kersten (2017) conducted a survey of mobile telephone use in people with MS to characterize levels of fatigue. The MS Society of New Zealand contacted participants by email, providing a link to the website with the questionnaire for completion online, by phone, or mail. The sample of 51 people had mean age of 48.5 (SD=12.8). Instruments included on the electronic platform were the Neurological Fatigue Index (NFI; questions about fatigue, sleep, and cognition) and the Fatigue Symptom Inventory (FSI; designed to assess severity/pattern of fatigue). Participants reported high levels of fatigue (mean=31.4, SD=5.3) as measured by the NFI. On the FSI, a majority reported fatigue interference with day-to-day activity. In addition, most participants had Internet access or used a phone, reinforcing the feasibility of mobile intervention delivery.
A descriptive survey study by Jongen and colleagues (2016) evaluated use and meaningfulness of an online program to gather information for 55 adults with MS from the MS Research Group, Netherlands. Surveys included the Multiple Sclerosis Impact Profile Medication and Adherence Inventory, and Activities Diary. The Activities Diary recorded MS-related activities over a 24-hour period. The e-consult diaries asked participants about symptoms (yes/no). Results indicated symptoms were discussed better after using the online system during the office visit. Overall response rate was 40%. In 46% of the respondents, the insight into their symptoms and disabilities increased since the use of the program; 18% indicated they were better able to handle symptoms and disability.
In a study by Amtmann and colleagues (2015), 1,597 people eligible and interested in participating were mailed a self-report paper survey (n=1,368) or directed to an online version of the survey (n=229), with reminder letters sent to non-responders 3-6 weeks later. Surveys were returned by 1,271 persons with MS (response rate 79.6%). The Modified Fatigue Impact Scale was used to obtain information on self-reported fatigue. Findings suggested adults with MS who report high levels of chronic pain and depressive symptoms may benefit from treatment approaches that address sleep, fatigue, and anxiety.
In a pilot longitudinal observational study, Turner and colleagues (2013) examined the feasibility of using home telehealth monitoring to improve clinical care and promote symptom self-management among Veterans with MS. The cohort consisted of 41 Veterans with MS from two Veterans Administration (VA) MS centers (Seattle, WA; Washington, DC) enrolled in the VA Care Coordination and Home Telehealth program (CCHT). CCHT operates over an analog telephone line using a text-based interface. The presence of symptoms was measured by the MS Disease-Management Protocol with eight core symptoms: neurologic symptoms, pain, fatigue, bladder function, bowel function, depression, adherence to MS disease-modifying therapies (DMTs), and side effects of DMTs. A total of 85.4% of participants provided consistent data from home monitoring. Overall satisfaction with home telehealth monitoring was high, with 87.5% of participants rating their experience as good or better. The most frequently reported symptoms at month 1 were fatigue (95.1%), depression (78%), and pain (70.7%).
In a cross-sectional descriptive study, Newland and colleagues (2012) recruited a convenience sample of persons with relapsing-remitting MS (RRMS) (N=339) from email invitations offered through a local MS society's list serve. A link to the website housing the questionnaire was sent for adults for online completion. Questions from the National Health Interview Survey (Centers for Disease Control and Prevention, 2012) were used to assess the presence of six health conditions. Participants also were asked to rate the severity of five symptoms (pain, weakness, fatigue, imbalance, disturbed sleep) on 0-10 numeric rating scales (none currently=0, very severe currently=10). The online survey was designed using Qualtrics software (Qualtrics Research Suite; Provo, UT), a user-friendly and Health Insurance Portability and Accountability Act-compliant interface for collecting data in a secure environment. The most severe symptoms reported by survey respondents were fatigue (M=5.98, SD=2.85), imbalance (M= 4.81, SD=3.17), weakness (M=4.68, SD=2.89), and disturbed sleep (M=4.14, SD=3.41). Likewise, the presence of depression was associated significantly with disturbed sleep (p<0.001).
In a randomized controlled trial, Moss-Morris and co-authors (2012) found an online format for assessing fatigue and other symptoms was feasible for gathering information and delivering an intervention. Authors used an Internet-based version of the intervention (MS Invigor8), which includes eight tailored, interactive sessions on topics such as understanding MS and quality of life. The sample of 40 patients was randomized to MS Invigor8 (n=23) or standard care (n=17). The MS Invigor8 group accessed sessions over 8-10 weeks and received up to three 30-60-minute telephone support sessions. Significant group differences were found on anxiety (F (1, 36) 1/4 88.99, p<0.001) and depression (F (1, 36) 1/4 119.79, p<0.001).
Knowledge gained from the current study will be useful for identifying gaps in the literature related to obtaining self-report about sleep and other symptoms in people with MS. Findings may be translated to other chronic disease for the best method to glean information on symptoms to improve nursing interventions. This study is expected to provide preliminary data to develop interventions to prevent or alleviate sleep problems and other symptoms in people with MS.
The purpose of this pilot study was to evaluate the feasibility of using EDs to capture information about sleep quality and other symptoms. The secondary aim was to collect data on lifestyle habits and other behaviors related to sleep quality experienced by people with MS.
A convenience sample of community-dwelling adults with MS was recruited from MS clinics in the midwestern United States during routine appointments and from a local MS society's listserv. Inclusion criteria were a definitive diagnosis of RRMS or secondary progressive MS, ages 18-70, willingness to write about symptoms and lifestyle habits in a web-based diary format, reliable access to a computer and the Internet, and ability to read and speak English. Data were collected for 7 consecutive days; however, because the primary aim was to examine feasibility of the data collection method, 4 days of ED data were accepted as full participation in this study.
The study was approved by the university's Institutional Review Board. Informed consent was obtained from all participants during private face-to-face clinic visits after all questions were answered; participants also were assured of confidentiality and their ability to withdraw at any time without consequence. Following informed consent, researchers collected demographics and provided instructions. Participants who volunteered for the study were instructed how to use REDCap, a data capture tool. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research and provide an intuitive interface for validated data entry, audit trails for tracking data manipulation and export procedures, automated export procedures for seamless data downloads to common statistical packages, and procedures for importing data from external sources (Harris et al., 2009). Participants were asked to log into REDCap once a day for 7 consecutive days to answer narrative questions in the ED regarding symptoms that positively or negatively impacted sleep and lifestyle habits.
See Table 2 for demographic data. Participants logged on each day for 7 consecutive days to record their symptom experience and lifestyle habits.
Descriptive statistics (SPSS 22) were used to analyze demographic variables. Summative content analysis was used to analyze the web-based diaries (Lincoln & Guba, 1985). Diaries were read several times for common themes by two researchers. An inductive process was used to identify themes, drawing on shared experiences or symptoms and lifestyle habits identified from diaries.
See Table 2 for demographic data.
One participant missed an ED entry when the password was forgotten. Another participant missed a data entry by not checking email on consecutive days. A third participant had difficulty using the ED platform on the phone. If participants missed an entry, researchers contacted them and provided instructions on reloading the application.
Experience with Symptoms
The most commonly reported symptom affecting sleep was pain (n=14). Pain was described as sharp or aching in the lower extremities, often making it difficult to fall asleep:
Participant 1: "Legs and ankles awake me with pain. Ankles bothered me and had sharp pain in legs. Numbness left side on back ... Had pain in my ankles and legs."
Participant 10: "My right side, especially my leg and foot ached. My right side, foot, and leg were still aching so even though I fell asleep."
Participant 18: "It took longer to fall asleep due to foot cramps." A few participants also reported pain awakened them during the night.
Participants reflected on being awakened frequently by the need to urinate, which they clearly found frustrating. They also found it difficult to return to a restful sleep after getting out of bed. As participant 3 expressed, "Have to use the bathroom; had to use the bathroom too many times. After going to bathroom had difficult time getting back to sleep."
Sleep-promoting behaviors were reported commonly by participants (see Table 3). Participants primarily indicated they needed to change behavior to promote sleep, such as adhering to a set sleep schedule, exercising, and relaxing before bedtime. Other activities noted in the daily EDs included prayer, yoga, and showering before bedtime. Some positive behaviors included the following:
Participant 8: "A walk down the street with my spouse helped pain in my leg ... slept better."
Participant 19: "I tried to follow a regular bedtime pattern."
Another common strategy for sleep promotion was having a dark environment. Five participants reported making the environment as dark as possible, to include lowering the ambient lighting. Two of them specifically offered the following:
Participant 17: "Keeping bedroom as dark as possible."
Participant 26: "Less ambient light in the room. The light from electronics makes it hard to get to sleep ... covered the electronics. Lowering the ambient lighting seems to help."
Application Ease of Use
In exit focus groups, one participant with peripheral neuropathy noted the highlighting feature on the application was difficult to master, while others stated the highlighting feature was simple to use. The body diagram used to describe pain locations was divided into nine regions (head/neck, hands, arms, chest, abdomen, upper back, lower back/pelvis, legs, feet). Difficulties with pinpointing the precise location of pain were mentioned by four participants (e.g., the indicator to depict neck pain appeared on the head). Participants rated the application as easy (n=2 of 9, 22%) or very easy (n=7, 78%) to use. Daily entries generally were completed in less than 2 minutes. One participant with mild visual deficits mentioned the print was difficult to read at times; however, she was able to read the screens out loud during the "think-aloud" exercise. All other participants reported the print size posed no difficulties.
Data from this study suggest pain remains problematic for people with MS. As in the current study, adults with MS have been found consistently to have higher rates of poor quality sleep related to pain and nocturia (Amtmann et al., 2015; Turner et al., 2013). Poor sleep was associated unfailingly with daytime consequences of fatigue, excessive sleepiness, and anxiety (Amtmann et al., 2015; Newland et al., 2012). Symptoms associated with disturbed sleep were pain, depression, and anxiety (Amtmann et al., 2015; Moss-Morris et al., 2012; Newland et al., 2012).
This study is the first to demonstrate use of an ED is a feasible method to collect daily symptom data from persons with MS. The adherence rates in this study (>91%) greatly exceeded research associated with traditional survey methods (e.g., pen-and-paper diaries) (Amtmann et al., 2015) and did not vary significantly over the 2-week study. Consistent with other studies (Amtmann et al., 2015; Boe Lunde et al.,, 2012; Brass et al., 2014; Labuz-Roszak et al., 2012; Vitkovo et al., 2014), almost 50% of participants reported symptoms such as pain and nocturia kept them awake. Addressing these symptoms may improve not only sleep, but also fatigue from lack of sleep. In addition, sleep quality often was affected by environmental factors, such as television, radio, telephone, or pets in the room. This finding may be due to the young-middle age of this population. Family members as a patient's support system need to be reminded of the person's need for sleep (National Sleep Foundation, 2017).
Findings indicated participants engaged in a number of behaviors to promote sleep. Reported positive behaviors for sleep included white noise (e.g., ceiling fan), cool room, quiet, and dark room. These positive sleep behaviors were consistent with older research. Sleep hygiene strategies were useful to participants, including exercising, reading, showering, and setting a regular bedtime. However, little research has been devoted to assessing the effect of a sleep hygiene education program for adults with MS.
The use of mobile phones to collect symptom characteristics offers many advantages over pen-and-paper diaries for persons with MS. In addition, people with MS appear to be extremely comfortable with technology and may become more fully engaged in their care when they are empowered to track symptoms in a manner that resonates with them (Van Kessel et al., 2017).
To date, studies on sleep among adults with MS mainly have been descriptive (considered as Level VI evidence) (Melnyk & Fineout-Overholt, 2014). Descriptive studies lack the ability to support causal inferences, and have the risk for selection and response bias. However, findings of this study suggested adults with MS have more difficulties in sleeping. Based on the small sample size from one study site, results thus are not generalizable to other populations. However, the narrative provides in-depth reflections that reveal common problems and solutions for people with MS. Because participants in this study were working, time constraints may have limited the descriptions. In the future, intermittent sleep diaries with detailed prompting questions and reminders may improve the quality and quantity of information gathered.
Nurses caring for adults with MS must recognize the importance of assessing pain, nocturia, and pre-bedtime behaviors that may impact sleep quality.
Implications for Nursing Practice
Nurses caring for adults with MS must recognize the importance of assessing pain, nocturia, and pre-bedtime behaviors that may impact sleep quality. Comprehensive care should include questions about sleep and how symptoms impact sleep (Frohman et al., 2013). Nurses also should assess sleep hygiene routinely and make suggestions for improvement. Specifically, assessing commonly reported symptoms such as pain can lead to the discovery of underlying problems (e.g., restless leg syndrome) (Newsome et al., 2017). Targeted symptomatic therapies (e.g., for nocturia and pain) may be an important part of managing problematic symptoms for many people with MS. In particular, nurses need to emphasize instructions on exercise, muscle strengthening, and limited fluid intake several hours before bedtime (see Table 1). To reduce anxiety, nurses may suggest strategies, such as progressive relaxation, support groups, resources for stress management, and evening bathing (National Multiple Sclerosis Society, 2012). Education on medication interactions and the effects of alcohol on sleep (Ebrahim, Shapiro, Williams, & Fenwick, 2013) should be incorporated in nursing care.
The complex nature of pain leads to difficulty in the modes of therapy and relief. Success in treating pain starts with a specific pain diagnosis; participants with MS may fail to achieve pain management unless their doctors first characterize the pain. Developing better tools for measuring pain is crucial for early detection of pain and selection of an appropriate treatment regimen. Currently, adults with MS who experience pain must have a physician characterize the pain and then may need to try several different treatment options before finding something that works (Amtmann et al., 2015; Sullivan, Scheman, LoPresti, & Prayor-Patterson, 2012). Participants in this study reported self-medicating for pain with over-the counter medications (see Table 3). Nurses caring for people with MS must recognize their use of pain management strategies to reduce and adjust to MS-related pain (National Multiple Sclerosis Society, 2012).
Nocturia also can be a problem for sleep in people with MS. According to a recent study by Delgado and colleagues (2017), nocturia was the second largest problem after pain in affecting the ability to get to sleep. For people with MS, addressing nocturia thus may improve the efficacy of behavioral treatment of sleep disturbances (Tyagi et al., 2014). Moreover, people with MS need education on behavior management (e.g., use of voiding schedule, pelvic floor training, diet instruction to limit irritants/decrease fluid after 7:00 p.m., medication management with anticholinergics, recognition of signs and symptoms of infection) (Newsome et al., 2017).
Recommendations for Future Research
Findings from this pilot study can be used as a guide for future larger studies to evaluate use of ED to glean information about symptoms and sleep quality in people with MS. Larger studies of sleep hygiene education may determine which behaviors improve quality of sleep. Due to limited recruitment sites, a more heterogeneous sample could expand knowledge. Because sleep EDs are designed to be completed quickly, descriptive data do not detail total time asleep. Future studies using objective measures of sleep maintenance and sleep onset are needed to strengthen these preliminary findings.
As identified in this study, pain and nocturia are common problems for patients with MS needing a good night's sleep (Amtmann et al., 2015; Delgado et al., 2017; Newland et al., 2012). By keeping diaries, they can identify positive and negative sleep management behaviors as well as symptoms that interfere with sleep. They can anticipate what symptoms may occur and treat them proactively. Results of this study indicated poor sleep is problematic for people with MS. Although lack of sleep seems to increase the impact of pain or other symptoms, the problem is potentially manageable. Increased nurse and patient education may promote adequate sleep.
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Pamela Newland, PhD, RN, CMSRN[R], is Associate Professor, Goldfarb School of Nursing, Barnes Jewish College, St Louis, MO.
Rebecca Lorenz, PhD, RN, is Associate Professor, School of Nursing, Saint Louis University, St. Louis, MO.
Florian P. Thomas, MD, PhD, MA, is Chair, Multiple Sclerosis Center, Neuroscience Institute, Hackensack University Medical Center, Seton Hall-Hackensack-Meridian School of Medicine, Hackensack, NJ.
Mary Bordner, JD, MSN, RN, is Adult/Gero Acute Care Nurse Practitioner, St. Clare Emergency Department, Fenton, MO.
Acknowledgments: The authors thank Angela Starkweather, PhD, ACNP-BC, CNRN, FAAN, Associate Dean for Academic Affairs, University of Connecticut School of Nursing, for her thoughtful review of this manuscript. The authors thank John Newland, Programmer/ Analyst, Washington University, Department of Pediatrics Computing Facility, St. Louis, MO, for his programming skills.
Note: This research was made possible by a research grant from the Academy of Medical-Surgical Nurses and Phillips Healthcare.
TABLE 1. Nonpharmacologic Strategies to Promote Sleep Category Strategies Rationale Environment Maintain a quiet, dark, Promotes sleep comfortable bedroom. Minimize light; beware of digital light displays on phones, clocks, computers. Sleep routine Keep regular bedtime Enhances synchrony with and rise time, even circadian rhythm on weekends. Avoid stimulating May lead to activities (e.g., physiological exercise) right arousal, making it before bedtime. difficult to fall asleep Relax at least 1 hour Reducing stress, before bedtime. promoting relaxation will increase readiness to sleep. Bedtime rituals Manage stress; write Promotes relaxation of down worries, mind, body practice mindfulness or other relaxation techniques. Limit caffeine, Promotes wakefulness; cigarettes, fragments sleep stimulants, alcohol. Lifestyle habits If able, increase Promotes daytime activity in the wakefulness, reduces afternoon or depression early evening (not close to bedtime). Get exposure to Helps maintain natural sunlight circadian rhythm or bright light during the day. Limit liquids Reduces nighttime (particularly awakenings caused alcohol, by nocturia caffeinated beverages) in the evening. Sources: Irish, Kline, Gunn, Buysse, & Hall, 2015; Morin et al., 2017. TABLE 2. Sample Demographics (N=28) Mean ([+ or -] SD) Time Since 11.3 (7.49) Diagnosis (years) Expanded Disability Status 3.8 (1.7) Scale--Self-Report (SR-EDSS) Education (in years) 15.4 (2.4) Age 46.1 (10.7) % MS Type Relapsing remitting 81 Secondary progressive 19 Gender Identity Male 14.8 Female 85.2 Marital Status Single, never married 18.5 Married 70.4 Divorced/Widowed 7.4 Other 3.7 Race White 81.5 Black 14.8 Other 3.7 Employment Employed 55.6 Unemployed 14.8 Disabled 22.2 Other 7.4 Disease-Modifying Drugs 85.2 Note: Percentages based on total for each group; may not equal 100 due to rounding. SD=standard deviation TABLE 3. Pharmacologic and Nonpharmacologic Interventions--Sleep Diary Narrative in Adults with Multiple Sclerosis Category Intervention Sleep "I sleep better in a cooler room." hygiene "I go to sleep at the same time every night." measures "Had a walk yesterday down the street with spouse." "Stretching exercises to help me unwind." "Shower before bed to relax." "I turned off all lights in the house so it was as dark as possible." "I would get a new mattress. Mine is old and it hurts my back." "I didn't drink soda with dinner or in the evening ... No caffeine after 6 p.m." "I did not eat or drink anything after 7 p.m.; this helped sleep." Pre-sleep "I watched television before going to bed." activities "I usually try to read before bed as it helps me to sleep." "I had three drinks. I think the alcohol helped me relax." "I kept a drink next to my bed during the night." "I pray before bed." Environment "I had a ceiling fan on high as well as a floor fan." "I was a little warm the second time (I woke up). So I adjusted the room temperature." "I actually sleep in a recliner due to shoulder problems and sleep apnea." Pain ".Took an Advil[R] so I wouldn't have any aches medications and pains." "I took a pain pill and some Excedrin[R] PM." "I took a pain pill and two gabapentin." Sleep ".Took melatonin." medications "I took 25 mg of over-the-counter Benadryl[R]."
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|Title Annotation:||Research for Practice|
|Author:||Newland, Pamela; Lorenz, Rebecca; Thomas, Florian P.; Bordner, Mary|
|Date:||Nov 1, 2017|
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