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Exploring the Patient Perspective of Fatigue in Adults with Visual Impairment: a Qualitative Study

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Exploring the Patient Perspective of Fatigue in Adults with Visual Impairment: a Qualitative Study Open Access Research BMJ Open: first published as 10.1136/bmjopen-2016-015023 on 3 August 2017. Downloaded from Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study Wouter Schakel,1 Christina Bode,2 Hilde P A van der Aa,1 Carel T J Hulshof,3 Judith E Bosmans,4 Gerardus H M B van Rens,1,5 Ruth M A van Nispen1 To cite: Schakel W, Bode C, van ABSTRACT Strengths and limitations of this study der Aa HPA, et al. Exploring the Objectives Fatigue is an often mentioned symptom by patient perspective of fatigue in patients with irreversible visual impairment. This study ► This qualitative study provides an in-depth adults with visual impairment: explored the patient perspective of fatigue in visually a qualitative study. BMJ Open exploration of the patient perspective of fatigue impaired adults with a focus on symptoms of fatigue, 2017;7:e015023. doi:10.1136/ in visually impaired adults regarding symptoms causes, consequences and coping strategies. bmjopen-2016-015023 of fatigue, causes, consequences and coping Setting Two large Dutch low vision multidisciplinary strategies. ► Prepublication history and rehabilitation organisations. ► Participants were selected from two Dutch low additional material are available. Participants 16 visually impaired adults with severe vision multidisciplinary rehabilitation centres To view these files, please visit symptoms of fatigue selected by purposive sampling. the journal online (http:// dx. doi. through purposive sampling to reflect a range of Methods A qualitative study involving semistructured org/ 10. 1136/ bmjopen- 2016- demographic characteristics (gender, age and work interviews. A total of four first-level codes were top–down 015023). status) and disease characteristics (ophthalmic predetermined in correspondence with the topics of the diagnosis, visual acuity, visual field and disease research question. Verbatim transcribed interviews were Received 10 November 2016 duration). Revised 24 May 2017 analysed with a combination of a deductive and inductive ► Participant’s symptoms of self-reported fatigue Accepted 5 June 2017 approach using open and axial coding. were checked with a well-validated instrument to Results Participants often described the symptoms of assess fatigue severity. fatigue as a mental, daily and physical experience. The ► A random selection of 10% of the citations most often mentioned causes of fatigue were a high was matched to the existing coding scheme cognitive load, the intensity and amount of activities, independently by a second researcher to improve the high effort necessary to establish visual perception, http://bmjopen.bmj.com/ reliability of the coding process. difficulty with light intensity and negative cognitions. ► Limitations include the relatively small sample size Fatigue had the greatest impact on the ability to carry out and the relatively young age and high amount of rare social roles and participation, emotional functioning and eye conditions in our sample which may limit the 1 cognitive functioning. The most common coping strategies Department of Ophthalmology, transferability of the findings to the total population were relaxation, external support, socialising and physical VU University Medical Centre of visually impaired adults. and Amsterdam Public Health exercise and the acceptance of fatigue. Research Institute, Amsterdam, Conclusions Our results indicate that low vision- The Netherlands related fatigue is mainly caused by population specific 2Department of Psychology, on September 24, 2021 by guest. Protected copyright. determinants that seem different from the fatigue available for the visually impaired population. Health & Technology, University experience described in studies with other patient of Twente, Enschede, The Cognitive behavioural therapy has proven to populations. Fatigue may be central to the way patients Netherlands be an effective treatment option for fatigue 3 react, adapt and compensate to the consequences of Coronel Institute of in patients with cancer,2 chronic fatigue vision loss. These findings indicate a need for future Occupational Health, Academic syndrome3 and Q fever fatigue syndrome4 Medical Center, University of research aimed at interventions specifically tailored to the Amsterdam, Amsterdam, The unique aspects of fatigue related to vision loss. but has not been evaluated in patients with Netherlands visual impairment. To the best of our knowl- 4Department of Health Sciences edge, there seem to be no studies available and Amsterdam Public Health which address the prevalence or determi- Research Institute, Faculty INTRODUCTION nants of fatigue in visually impaired persons. of Earth and Life Sciences, VU University Amsterdam, Fatigue is an often mentioned complaint Previous research on fatigue in visually Amsterdam, The Netherlands by patients with irreversible visual impair- impaired patients is often limited to patient 5Department of Ophthalmology, ment. In fact, they have prioritised fatigue populations in which fatigue or feelings of Elkerliek Hospital, Helmond, The in the top five of problems with the highest exhaustion is a known symptom.5–7 In only a Netherlands rehabilitation urgency.1 However, low-vision few studies, the relation between fatigue and Correspondence to professionals are at a loss on how to deal visual impairment has been assessed. Mojon- Wouter Schakel; effectively with fatigue because currently, Azzi et al found that a greater impairment of w. schakel@ vumc. nl no evidence-based treatment options are vision was associated with a higher probability Schakel W, et al. BMJ Open 2017;7:e015023. doi:10.1136/bmjopen-2016-015023 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-015023 on 3 August 2017. Downloaded from of feeling fatigued.8 Similar results have been reported in representations are an important determinant of The Blue Mountains Eye Study by Chia et al. In their popu- behaviour and can have an impact on the way patients lation-based study, irreversible visual impairment (due cope with their illness.32 Understanding these cognitive to various eye conditions) was associated with increased representations can give insights into the emotional fatigue when compared with participants without visual responses to illness which could influence the perceived impairment and correctable visual impairment.9 severity or consequences of fatigue in people with low Symptoms of fatigue have been found to have a nega- vision. Qualitative research methods allow an in-depth tive impact on psychological well-being, quality of life, exploration of subjective symptoms such as the expe- employment and work-related activities among patients rience of fatigue. The aim of this qualitative study is, with chronic disease.10–16 Similar results have been therefore, to explore the patient perspective of perceived reported with respect to the consequences of fatigue in symptoms, causes, consequences and coping strategies patients with vision loss. In the study of Bruijning et al,17 to deal with fatigue in a sample of Dutch patients with consequences of fatigue mentioned by visually impaired visual impairment (≥18 years). patients included difficulty maintaining energy to endure daily activities (eg, running errands, cooking and work), difficulty concentrating and processing or memo- METHODS rising information, crossing one’s personal boundaries Design and participants regarding energy balance and requiring extra effort to Patients aged 18 years or older registered at two large perceive and process visual stimuli.17 Dutch low vision rehabilitation organisations were invited Studies have shown that fatigue is related specifically to participate in this study. Patients can be referred to to underlying disease mechanisms in different patient these centres based on criteria described in the Dutch populations.13 18 19 Fatigue in visual impairment might guideline ‘Vision disorders, rehabilitation and referral’33 be related to the difficulty of processing visual stimuli that mainly follow the WHO criteria, where low vision is which may require more concentration and may result defined as the best-corrected visual acuity in the better in eye strain. An association between fatigue-related and eye of <0.3, but ≥0.05 (Snellen notation) and/or visual sleep-related problems has been mentioned in visually field of <20° around the central fixation point, or other impaired patients with some remaining vision20–22 and severe visual field defects. Blindness is defined as the in blind patients because of the disturbance in circa- best-corrected visual acuity in the better eye of <0.05 and/ dian rhythms.23 The positive effect of physical activity or a visual field of <10° around the central fixation point. on reduction of fatigue24 may be difficult to achieve in Selection criteria for the study were: (1) sufficient mastery visually impaired adults because they engage in less phys- of the Dutch language and (2) having severe symptoms of ical activity compared with persons without vision loss.25 fatigue as assessed by professionals of the centres (based http://bmjopen.bmj.com/ Moreover, fatigue can be a symptom of depression,26 a on their observations of the patient and patient’s self-re- psychological (sub)clinical disorder which is highly prev- ported fatigue). By purposive sampling, participants were alent in persons with visual impairment.27 Therefore, selected to reflect a mix of ophthalmic diagnosis, disease fatigue may also be related to psychological factors. duration,
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