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

Maartens, Desiree (2018-12)

Thesis (MMed)--Stellenbosch University, 2018.

Thesis

ENGLISH ABSTRACT: Background: Multiple Sclerosis (MS) affects approximately 2.3 million people globally with the majority of the patients living in Europe and North America and the lowest in sub-Saharan Africa. The research on MS in sub-Saharan Africa is therefore limited, and even less research is available that has focussed on the experiences and symptoms of patients with MS (pwMS) in this geographical region. A particular complex symptom that is experienced often by majority of pwMS (70-80%) is severe fatigue. Yet, the study of severe fatigue in pwMS, its quantification and the management thereof is difficult due to its subjective and multidimensional nature. This complexity hampers the methodological rigour (e.g. identify appropriate patient population and selection of primary outcomes) in studies that evaluate management programs for fatigue. Objective: The main aims of this dissertation were to; 1) scope the existing literature focussing on MS in originating from sub-Saharan Africa in a systematic fashion, 2) to evaluate the characteristics and key symptoms of pwMS in South Africa(SA), and 3) investigate the agreement between the reported cut-off values for categorising severe fatigue in three commonly used questionnaires in order to determine new cut-offs values to classify a participant as severely fatigued across all three questionnaires. Methods: A scoping review of the literature on MS from sub-Saharan Africa was undertaken as the first part of the dissertation. For the second part of the dissertation, a cross-sectional survey was sent out to about 1000 pwMS affiliated with the Multiple Sclerosis Society of SA. Outcomes were included across all domains of the International Classification of Functioning model (Health condition, Body Function, Activity, Participation, Environmental- and Personal factors). The third part of the dissertation used the fatigue questionnaires from the cross-sectional study to determine the agreement between the questionnaires and to determine new cut-off values to classify a participant as severely fatigued. The three questionnaires used were: The Fatigue Severity Scale (FSS), The Fatigue Scale for Motor and Cognitive Functions (FSMC) and the PROMIS Fatigue Short Form (SF). Results: There were 33 studies from sub-Saharan Africa included for the scoping review. Four themes could be derived to group the included studies; aetiology (n = 6), epidemiology (n = 9), haemotology (n = 13) and other (n = 5). Majority of the studies (88%) were conducted in South Africa. However, no detailed study on the characteristics and symptom experience of pwMS in sub-Saharan Africa was identified. Subsequently, 122 of 1000 pwMS (12.2%) completed the survey (Age=47±10 years, Male (%) =14, disease duration=11±9 years). 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. Detrimental lifestyle behaviour was prevalent, with 64% of pwMS being inactive and 66% reported having smoked at some time in their lives. The FSS and FSMC categorised 73.9% and 78.9% respectively as severely fatigued. The PROMIS Fatigue SF categorised only 30% 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 would provide 100% certainty that the “hypothetical” patient with these values would have qualified as severely fatigued on the FSMC. Conversely, a value 88.5 out of 100 for FSMC would provide 100% certainty that this same patient would have qualified as severe fatigued on the FSS. Conclusion: Despite an increased reporting of MS in sub-Saharan Africa, there is very little research of patient experiences and management conducted in this specific context. The characteristics and symptom experience of pwMS in in SA were much in line with those for developed countries. A triad of poor lifestyle behaviour, low levels of physical activity, and high burden of comorbidity are concerning and warrant future research. We argue for higher than the conventional cut-off values for indication of the presence of severe fatigue are used in the further study of fatigue specifically, to facilitate more accurate estimates of the effect of fatigue management programs.

AFRIKAANSE OPSOMMING: Agtergrond: Veelvuldige Sklerose (MS) affekteer ongeveer 2,3 miljoen mense wêreldwyd met die meeste pasiënte wat in Europa en Noord-Amerika woon en die minste in Afrika suid van die Sahara. Die navorsing oor MS in Afrika suid van die Sahara is dus beperk, en nog minder navorsing is beskikbaar wat gefokus het op die ervarings en simptome van pasiënte met MS (pwMS) in hierdie geografiese streek. 'n Spesifieke komplekse simptoom wat dikwels deur die meerderheid van pwMS (70-80%) ervaar word, is erge moegheid. Tog is die studie van erge moegheid in pwMS, die kwantifisering daarvan en die bestuur daarvan moeilik as gevolg van sy subjektiewe en multidimensionele aard. Hierdie kompleksiteit belemmer die metodologiese rigor (bv. Identifiseer gepaste pasiëntbevolking en seleksie van primêre uitkomste) in studies wat bestuursprogramme vir moegheid evalueer. Doelwit: Die hoofdoelwitte van hierdie verhandeling was om; 1) die bestaande literatuur te fokus op MS op 'n sistematiese wyse vanuit Afrika suid van die Sahara, 2) die eienskappe en sleutelsimptome van pwMS in Suid-Afrika (SA) te evalueer, en 3) die ooreenkoms tussen die gerapporteerde sny- af waardes vir die kategorisering van ernstige moegheid in drie algemeen gebruikte vraelyste om nuwe afsnywaardes te bepaal om 'n deelnemer so ernstig moeg te maak oor al drie vraelyste. Metodes: 'n Omvangsbepaling van die literatuur oor MS uit Afrika suid van die Sahara is as die eerste gedeelte van die verhandeling onderneem. Vir die tweede gedeelte van die proefskrif is 'n kruisdeursnee-opname uitgestuur na ongeveer 1000 pwMS wat geaffilieer is met die Multiple Sclerosis Society of SA. Uitkomste is ingesluit in alle domeine van die Internasionale Klassifikasie van Funksionele model (Gesondheidstoestand, Liggaamsfunksie, Aktiwiteit, Deelname, Omgewings- en Persoonlike faktore). Die derde gedeelte van die verhandeling gebruik die moegheidsvraelys uit die dwarssnitstudie om die ooreenkoms tussen die vraelyste te bepaal en nuwe afsnywaardes te bepaal om 'n deelnemer so ernstig vermoeid te klassifiseer. Die drie vraelyste wat gebruik is, was: Die Vermoeidheid Ernstigheidskaal (FSS), Die Moegheidskaal vir Motoriese en Kognitiewe Funksies (FSMC) en die PROMIS Moegheidsvorm (SF). Resultate: Daar was 33 studies uit sub-Sahara Afrika ingesluit vir die omvangsbepaling. Vier temas kan afgelei word om die ingesluit studies te groepeer; etiologie (n = 6), epidemiologie (n = 9), hemotologie (n = 13) en ander (n = 5). Meerderheid van die studies (88%) is in Suid-Afrika uitgevoer. Geen gedetailleerde studie oor die eienskappe en simptome-ervaring van pwMS in Afrika suid van die Sahara is egter geïdentifiseer nie. Vervolgens het 122 van 1000 pwMS (12.2%) die opname voltooi (Ouderdom = 47 ± 10 jaar, Manlik (%) = 14, Siekte duur = 11 ± 9 jaar). 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. Skadelike lewenstyl gedrag was algemeen, met 64% van die pwMS inaktief en 66% het gerapporteer dat hulle op 'n sekere tyd in hul lewens gerook het. Die FSS en FSMC het onderskeidelik 73,9% en 78,9% as swaar vermoeid gekategoriseer. Die PROMIS-moegheid SF het slegs 30% so ernstig vermoei. 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 sal 100% sekerheid gee dat die "hipotetiese" pasiënt met hierdie waardes op die FSMC so ernstig gekwalifiseer het. Omgekeerd sal 'n waarde van 88.5 uit 100 vir FSMC 100% sekerheid gee dat dieselfde pasiënt as ernstig moeg op die FSS gekwalifiseer het. Gevolgtrekking: Ondanks die toenemende rapportering van MS in Afrika suid van die Sahara, is daar baie min navorsing oor pasiëntervarings en -bestuur wat in hierdie spesifieke konteks uitgevoer word. Die eienskappe en simptome-ervaring van pwMS in SA was baie in lyn met dié vir ontwikkelde lande. 'N Triade van swak lewenstylgedrag, lae vlakke van fisiese aktiwiteit, en hoë las van samevloeiing, het betrekking op toekomstige navorsing. Ons argumenteer vir hoër as die konvensionele afsnywaardes vir aanduiding van die teenwoordigheid van erge moegheid word gebruik in die verdere studie van moegheid spesifiek om meer akkurate ramings van die effek van moegheidsbestuursprogramme te fasiliteer.

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