New Zealand has a high prevalence of multiple sclerosis (MS). In 2006, the age-standardized prevalence of MS among the general population of New Zealand was 71.9 per 100,000 [1]. In contrast, the age-standardized prevalence of MS in Māori has remained constant at 17.5 per 100,000 [1]. Between 1968 and 2006, the disease frequency for MS in New Zealand has increased by nearly 90%, from 37.8 in 1968 to current level of 71.9 [2]. During the same 38-year period, the gender ratio essentially remained constant.

One of the most commonly reported symptoms of MS is fatigue, affecting more than 80% of patients [3]. Although often identified as a symptom of MS, fatigue is often not treated, perhaps because it typically appears unrelated to the severity of the central disease process [4]. MS fatigue differs from tiredness experienced by healthy people in both severity and impact. MS fatigue has a profound effect on all spheres of life [3,5] for people with MS, their relatives, and the nursing staff [6,7]. Fatigue is one of the key precipitants of early retirement [8,9].

Little is known about levels of fatigue severity and the impact experienced by people with MS fatigue in New Zealand [10]. Self-report measures of fatigue can be an appropriate assessment option given the subjective experience of the symptom. The advantage of self-report measures are that they are generally short, widely available, easy for the patient to understand, and require little training by the assessor [11]. Additionally, self-report measures of fatigue have concurrent validity and are acceptable to people with MS [12]. There is, however, large variation and inconsistency across studies measuring the severity and impact of MS fatigue, which might be partly due to different measures used [13-16]).

At present, the range of measurement options means assessors need to be clear about the aspects of fatigue they intend to measure (eg, severity or impact of fatigue), in which population and for what purpose, in order to select the most relevant self-report measure. There is a paucity of research regarding which measure of fatigue is the most appropriate under differing conditions. A more concise definition of fatigue is needed, along with a high-quality measurement instrument. To attempt to address these issues for people with MS, the Neurological Fatigue Index for MS was developed [16]. This scale was designed to conform to the Rasch measurement model [17] and rigorously tested to determine its reproducibility. The scale can be used with people with MS of “any age, sex, and duration (of MS symptoms)” [18]. The minimum clinically important difference for the Neurological Fatigue Index for MS was found to be small (2.49 of a 30-point range), such that changes in the physical, cognitive, summary, and nocturnal sleep scales were aligned with the respondents’ perceived changes in fatigue, and most importantly, the resultant scores showed no change when none was perceived [18].

The 13-item, self-report measure Fatigue Symptom Inventory was originally designed to measure the intensity and duration of fatigue and its interference with quality of life in breast cancer patients [19]. Although the Fatigue Symptom Inventory has not been validated for MS, Hann et al [19] suggest that the Fatigue Symptom Inventory could be used to evaluate the physical and psychological characteristics of fatigue and quality of life across groups of patients with different diagnoses, and it has been used extensively in research with MS patients.

Along with challenges in measuring severity and impact of MS fatigue and the lack of New Zealand data, there have been challenges in terms of delivering interventions for this group of people. Cognitive behavioral therapy interventions for MS fatigue, delivered in individual, group, or Internet programs, have been found to be effective [20-25]. However, cognitive behavioral therapy interventions delivered face-to-face are not readily available due to the lack of people with this training working in MS-related services and limited health resources [10].

In New Zealand, a recent survey suggests 86% of people use the Internet, of whom 91% have access to broadband [26]. A key limitation of Internet-based cognitive behavioral therapy programs for MS fatigue is that the person needs to be in front of a computer. However, the number of people using smartphones that have access to the Internet is increasing [26], providing a fruitful opportunity for health applications. The key advantages of mobile phone technologies include the ability to provide an individual level of support to change health behaviors and improve disease management, allowing temporal synchronization of the intervention delivery and allowing the intervention to claim people’s attention when it is most relevant or in the best context [27]. There is increasing evidence that text messages and other smartphone technology are effective in drug adherence, improved diabetes self-management [28], and cessation of smoking interventions [29]. However, other than wearable sensors including accelerometers, gyroscopes, and pressure-sensitive textiles [30], there is limited evidence for the use of smartphone technology in people with MS [31-33].

The aim of the current project was to survey people with MS to (1) review the types of mobile devices people with MS use or would consider using for a health intervention, (2) identify the level of Internet access they have, and (3) characterize the levels of fatigue severity and their impact experienced by the people in our sample to provide an estimate of fatigue severity of people with MS in New Zealand. The ultimate goal of this work was to guide the future development of a mobile intervention for the management of fatigue for people with MS.

In total, 51 people with MS took part in the study. We cannot comment on the response rate as recruitment was via social media. The mean age of the participants was 48.5 (SD 12.8) years and ranged from 26 to 71 years. A large majority (39/51, 77%) were female, 16% (8/51) were male, and the majority were New Zealand European. The demographic distribution of the respondents is shown in Table 1. Of the 51 respondents, 38 (75%) lived within an urban environment.

Findings of the levels of fatigue severity and their impact experienced by participants are shown in Table 2. On average, people suffered from significant levels of fatigue as measured with the summary score of the Neurological Fatigue Index (mean 31.4, SD 5.3, range 15-40; maximum possible score is 40). The highest fatigue scores were in the physical subcategory.

The Fatigue Symptom Inventory [24,34] is designed to assess the severity, frequency, and daily pattern of fatigue as well as its perceived interference with quality of life (see Table 3).

Lower scores denote less acute problems with fatigue. The total mean score of fatigue severity in the past week was 5.59 (SD 1.9). In total, 84% (43/51) of respondents scored on average more than 3 on the fatigue severity questions, implying significant fatigue. The total mean score for fatigue interference with activities during the past week was 4.37 (SD 2.3). Fatigue frequency during the past week was 5.45 (SD 2.5). The majority of participants reported their fatigue to be worst in the afternoon (22/51, 43%), but a sizeable group said there was no consistent pattern to their fatigue (14/51, 28%). The majority of participants (37/51, 73%) reported the use of strategies to alleviate fatigue (eg, timing of certain activities, managing stress, pacing and resting).

Mobile phone usage was high, with 86% (44/51) of respondents reporting that they have a mobile phone; 41% (44/51) use an iPhone, 39% (20/51) use an Android phone, 2% (1/51) use a Windows phone, and 4% (2/51) use a Blackberry. In addition, 9% (5/51) have access to 2 phones.

Mobile phone apps were used by 75% (38/51) of respondents. A total of 6% (3/51) stated they didn’t know, and 20% (10/51) did not answer the question. Along with mobile phones, people with MS reported using a range of other mobile devices, including laptops (32/51, 63%) and tablets like iPad (25/51, 49%), iPod Touch (6/51, 12%), iPad Mini 4 of 51 (4/51, 8%), and e-book readers (14/51, 28%). Half of respondents (25/51, 49%) had access to 2 mobile devices. Finally, 1 participant could not afford a tablet and 1 person reported having no need for one.

When asked where they were able to access the Internet, 92% (47/51) reported accessing the Internet from home. Other locations where participants accessed the Internet included work, locations outside the home, and other homes (Table 4). Daily Internet usage was commonly reported by participants with an average use of 2 hours, 23 minutes per day. One-quarter (13/51, 26%) of participants did not access the Internet at all.

Some participants reported that mobile phone or app use was negatively affected by their symptoms, such as visual problems (6/51, 12%) and weakness (15/51, 29%). Examples of visual problems included trouble focusing, optic neuritis, and blind spots. People also reported other symptoms of MS that could affect their use of such technology, such as eyestrain, general fatigue, numbness in the fingers, numbness of 1 side of the body, excessive tremor in hands and fingers, and 1 person reporting difficulty with voice recognition training problematic because of slurred speech.

Only a small percentage of participants (4/51, 8%) reported the use of special devices to access mobile technology. Such special devices included onscreen virtual keyboards (12/51, 23%), alternative mouse systems (3/51, 6%), voice recognition (3/51, 6%), and a screen magnifier (2/51, 4%).

In summary, New Zealand survey participants with MS reported high levels of both fatigue severity and fatigue impact. Responses also indicated that the large majority of participants have a mobile device, use apps, and have access to the Internet.