Ontwikkeling van een interventie voor het doelmatig behandelen van vermoeidheidsklachten van volwassenen met een visuele beperking

Background Symptoms of fatigue are frequently reported by visually impaired clients and can seriously affect the capacity of clients to cope with everyday life, resulting in only partial participation in society. Clients acknowledge this problem and have prioritized rehabilitation goals regarding fatigue, by placing it in the top 5 of symptoms with the highest rehabilitation urgency. There is little information available about the determinants of fatigue in visually impaired adults and no treatment interventions have been developed. Identifying the determinants of fatigue is essential when developing an intervention. Tailored interventions incorporating population specific determinants of fatigue have been proven effective in other chronic patient populations. Without incorporating determinants specifically relevant for visually impaired adults, the intervention could be ineffective or suboptimal. Not treating fatigue (effectively) can lead to chronic fatigue, feelings of hopelessness and depression. Therefore this study aims to investigate the specific determinants of fatigue for visually impaired adults (compared with normally sighted adults). Parallel to this, a client-tailored intervention aimed to treat fatigue, by focussing on its specific determinants, will be developed employing a user centred design. This intervention is desired, because successful treatment of fatigue can lead to more steady rehabilitation progress, increase clients’ participation in society, their quality of life and psychosocial wellbeing. Strategy A multicentre case-control study evaluating client-specific determinants of fatigue, by comparing symptoms of fatigue in a population of visually impaired adults (N=250) with symptoms in a control group of adults without a visual impairment (N=250), creating a model of fatigue. By comparing the fatigue determinants of visually impaired persons with the control group, a distinction can be made between factors that generally contribute to fatigue and factors that specifically contribute in case of visual impairment. Eligibility criteria for participating in the study are: being registered at a low vision rehabilitation centre (versus no visual impairment in the control group), aged 18+, no cognitive impairment, sufficient mastery of the Dutch language and no present diagnosis of cancer, multiple sclerosis and/or chronic fatigue syndrome. The control will be sampled to resemble the study population regarding age and gender distribution. Data collection will take place by administering questionnaires over the phone to the client group and electronically or by post to the control group. These questionnaires will measure general and expected population specific determinants of fatigue, inventoried through interviews and focus groups with clients and professionals (time investment: 1.5 hours). Examples of expected determinants are: demographic data (e.g. gender, age, visual acuity, comorbidity), self-efficacy, physical activity, general perceived health, psychological wellbeing. The data will be analysed using structural equation modelling where two latent variables of fatigue will be implemented. First, the “fatigue model” of the visually impaired group will be built. Then the same model will be tested in the control group to investigate similarities or differences in patterns and symptoms of fatigue. In addition, parallel to this data collection, current interventions aimed at treating fatigue in other chronic conditions will be studied in a systematic review, and current non-specific treatment techniques used at Dutch low vision rehabilitation centres to decrease fatigue will be evaluated. This information and the fatigue model will lead to a draft of the intervention. This draft (and the study outcomes) will be presented to clients and professionals during an invitational conference. During this conference, clients and professionals can advise on the content of the intervention, resulting in the final design of the intervention to treat fatigue in visually impaired adults. In addition, a comprehensive user manual will be written. The feasibility of the intervention and the manual will be evaluated by professionals of the low vision rehabilitation centres. Implementation Due to the extensive involvement of clients, the intervention will reflect their perspectives, wishes and needs. The involvement of professionals will ensure clinical relevance and correspondence to current clinical practice. By implementing the knowledge obtained in this study in daily practice, clients can immediately benefit from a client-centered population specific approach to decrease symptoms of fatigue. This could enhance their physical and emotional wellbeing, participation and quality of life. Furthermore, this study will contribute greatly to current scientific knowledge in the field of low vision.