A study of comorbidities, lifestyle risk factors and fatigue of patients with multiple sclerosis in South Africa

Maartens, Desiree Duane (2019-12)

Thesis (MMed)--Stellenbosch University, 2019.

Thesis

ENGLISH SUMMARY : Background: Multiple Sclerosis (MS) affects approximately 2.3 million people globally. A geographical gradient in the prevalence of MS has been reported, with the lowest prevalence reported for sub- Saharan Africa. The vast contextual differences between sub-Saharan Africa and developing countries may argue for a better understanding of MS in an African setting specifically. Aims and Objectives: The main aims of this thesis were to better understand MS in an African context by reviewing research conducted in Sub-Saharan Africa in the past, and build upon that knowledge by evaluating demographics and characteristics of pwMS in an African country (South Africa [SA]). The objectives were to; (i) scope the existing literature on MS, originating from sub-Saharan Africa (Chapter 2) (ii) evaluate the characteristics and key symptoms of pwMS in SA (Chapter 3), and (iii) investigate the agreement between the reported cut-off values for categorising severe fatigue, one of the key symptoms reported by patients with MS globally, by using three different questionnaires (Chapter 4). Methods: (i) A scoping review of the literature on MS from sub-Saharan Africa was undertaken. (ii) A cross-sectional online survey was developed and distributed to all pwMS in SA affiliated with the Multiple Sclerosis Society of SA (n=1048). Measures were included across all domains of the International Classification of Functioning model. (iii) The fatigue questionnaires (Fatigue Severity Scale (FSS), Fatigue Scale for Motor and Cognitive Functions (FSMC) and PROMIS Fatigue Short Form (SF)) included in the crosssectional study were subsequently used to determine their agreement in identifying patients with severe fatigue using previous reported cut-off values, and Receiver Operating Curves were developed to determine new robust cut-off values which acknowledge the unidimensional character of each questionnaire. Results: Thirty-three studies from sub-Saharan Africa were included for the scoping review. Four themes could be derived to group the included studies; aetiology (n=6), epidemiology (n=9), haematology (n=13) and other (n = 5). Majority of the studies (88%) were conducted in South Africa, and only few reports were from the last decade (9%). No comprehensive report on the characteristics and symptom experience of pwMS in sub-Saharan Africa was identified. Subsequently, 122 pwMS (11.6%) completed the anonymous survey (Age=4710yrs, Male (%) =14). PwMS were generally moderately disabled (30.2%) according to the Patient Determined Disease Steps. Comorbidity was frequent, with 39.3% of pwMS reporting three or more comorbidities. The most common comorbidities being: depression (36.1%), high blood pressure and high cholesterol (20.5%) respectively, migraines (15.6%) and anxiety disorders (13.9%). The FSS, FSMC and PROMIS Fatigue SF categorised 73.9%, 78.9% and 30% respectively as severely fatigued. Using Cohen’s Kappa, a significantly moderate agreement was found between FSS and FSMC, (k = 0.563, p = 0.000), and not the PROMIS Fatigue SF. Cut-off values of 5.8 out of 7 for the FSS and 88.5 out of 100 for FSMC would provide 100% certainty a patient with these values (or higher) would have classified as having severe fatigue on both fatigue measures. Conclusion: Despite an increased reporting of MS in sub-Saharan Africa, there is very little recent research on the epidemiology and characteristics of patients with MS in this context. Intervention studies specifically developed for an African context were absent. A triad of poor lifestyle behaviour, low levels of physical activity, and high burden of comorbidity were reported which are concerning in the light of the global burden of disease. Often hampered by the multi-dimensional character of fatigue, the developed robust cut-off values for fatigue could be used in future research where the presence of fatigue is important in for instance evaluating the benefits of interventions to tackle this key symptom. The results of this thesis can be used to set the stage for developing an African specific research agenda for MS.

AFRIKAANSE OPSOMMING : Agtergrond: Veelvuldige Sklerose (MS) affekteer ongeveer 2.3 miljoen mense wêreldwyd. 'n Geografiese gradiënt in die voorkoms van MS is aangemeld, met die laagste voorkoms vir Afrika suid van die Sahara gerapporteer. Die groot kontekstuele verskille tussen Afrika suid van die Sahara en ontwikkelende lande kan spesifiek argumenteer vir 'n beter begrip van MS in 'n Afrika-omgewing. Doelwitte en doelstellings: Die hoofdoelwitte van hierdie proefskrif was om MS in 'n Afrika-konteks beter te verstaan deur navorsing in Afrika suid van die Sahara te hersien, en voort te bou op daardie kennis deur die demografie en eienskappe van pwMS in 'n Afrika-land (Suid-Afrika) te evalueer Afrika [SA]). Die doelwitte was om; (i) bestudeer die bestaande literatuur oor MS, afkomstig van Afrika suid van die Sahara (Hoofstuk 2) (ii) die eienskappe en sleutelsimptome van pwMS in SA (hoofstuk 3) te evalueer, en (iii) die ooreenkoms tussen die gerapporteerde afsnywaardes vir die kategorisering van ernstige moegheid, een van die sleutelsimptome wat deur pasiënte met MS wêreldwyd gerapporteer word, ondersoek deur drie verskillende vraelyste te gebruik (Hoofstuk 4). Metodes: (i) 'n Omvangbepalingsoorsig van die literatuur oor MS uit Afrika suid van die Sahara is onderneem. (ii) 'n Deursnee-opname is ontwikkel en versprei aan alle pwMS in SA wat geaffilieer is by die Multiple Sclerosis Society of SA (n = 1048). Maatreëls is ingesluit in alle domeine van die Internasionale Klassifikasie van Funksionele model. (iii) Die uitputtingsvraelyste (Fatigue Severity Scale (Fatigue Severity Scale (FSS)), Vermoeidheidskaal vir Motoriese en Kognitiewe Funksies (FSMC) en PROMIS Fatigue Short Form (SF)) wat in die dwarssnitstudie ingesluit is, is later gebruik om hul ooreenkoms te identifiseer om pasiënte te identifiseer met erge moegheid deur gebruik te maak van vorige gerapporteerde afsnywaardes, en Ontvanger Bedryfskurwes is ontwikkel om nuwe robuuste afsnywaardes te bepaal wat die unidimensionele karakter van elke vraelys erken. Resultate: Drie-en-dertig studies uit Afrika suid van die Sahara is ingesluit vir die omvangsbepaling. Vier temas kan afgelei word om die ingesluit studies te groepeer; etiologie (n = 6), epidemiologie (n = 9), hematologie (n = 13) en ander (n = 5). Meerderheid van die studies (88%) is in Suid-Afrika uitgevoer, en slegs enkele verslae was van die afgelope dekade (...%). Geen omvattende verslag oor die eienskappe en simptome-ervaring van pwMS in Afrika suid van die Sahara is geïdentifiseer nie. Vervolgens het 122 pwMS (11.6%) die anonieme opname voltooi (Ouderdom = 47 ± 10 jaar, Manlik (%) = 14). PwMS was oor die algemeen matig gedeaktiveer (30.2%) volgens die pasiëntbepaalde siektetoestande. Komorbiditeit was gereeld, met 39.3% van PwMS wat drie of meer comorbiditeite rapporteer. Die FSS, FSMC en PROMIS Moegheid SF het onderskeidelik 73.9%, 78.9% en 30% as ernstig vermoeid geraak. Met behulp van Cohen se Kappa is 'n beduidende matige ooreenkoms tussen FSS en FSMC gevind, (k = 0.563, p = 0.000), en nie die PROMIS-moegheid SF nie. Afsnywaardes van 5.8 uit 7 vir die FSS en 88.5 uit 100 vir FSMC sal 100% sekerheid bied. 'N Pasiënt met hierdie waardes (of hoër) sou geklassifiseer het as 'n ernstige moegheid op beide moegheidsmaatreëls. Gevolgtrekking: Ondanks die toenemende rapportering van MS in Afrika suid van die Sahara, is daar baie min onlangse navorsing oor die epidemiologie en eienskappe van pasiënte met MS in hierdie konteks. Intervensiestudies wat spesifiek vir 'n Afrika-konteks ontwikkel is, was afwesig. 'N triade van swak lewenstyl gedrag, lae vlakke van fisiese aktiwiteit, en 'n hoë las van comorbiditeit is aangemeld wat aangaan in die lig van die wêreldwye las van siekte. Dikwels deur die multidimensionele karakter van moegheid belemmer, kan die ontwikkelde sterk afsnywaardes vir moegheid gebruik word in toekomstige navorsing waar die aanwesigheid van moegheid belangrik is, byvoorbeeld om die voordele van intervensies te evalueer om hierdie belangrike simptoom aan te pak. Die uitslae van hierdie proefskrif kan gebruik word om die verhoog te stel vir die ontwikkeling van 'n Afrika-spesifieke navorsingsagenda vir MS.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/106991
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