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Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.

ABSTRACT: Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out ('monitor') or avoid ('blunt') information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants' quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.People with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.

SUBMITTER: Dennison L

PROVIDER: S-EPMC5831099 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.

Dennison Laura L Brown Martina M Kirby Sarah S Galea Ian I

PloS one 20180228 2

<h4>Background</h4>Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communica ...[more]

PMID: 29489869

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Project description:ObjectivesTo explore sequences of annual states of activity and sickness absence (SA) or disability pension (DP) (SA/DP) among working-aged people with multiple sclerosis (PwMS) as well as characteristics associated with the identified types of working-life sequences.DesignNationwide Swedish register-based cohort study from 1 year prior to 5 years after the year of multiple sclerosis (MS) diagnosis.SettingSweden.ParticipantsPwMS diagnosed in 2008-2011 when aged 20-55 (n=2652, 69.9% women).Primary and secondary outcome measuresIndividual-level sequences spanning 7 years were constructed with annual states regarding activity (income from paid work, student allowances, parental leave or unemployment compensation) and/or SA/DP. Types of working-life sequences were identified among the individuals' sequences using hierarchical cluster analysis with optimal matching dissimilarity measures.ResultsSix types of working-life sequences were identified. The largest cluster, Stable High Activity, represented 48.4% of the cohort. Other types were: Stable High SA/DP (14.5%); Other (4.5%); and three types with mixed activity and varying SA/DP regarding the number of days/year and timing (32.6%). Characteristics of the different identified types of sequences were subsequently investigated. All types of sequences had lower odds for university education (OR range: 0.18-0.72) compared with Stable High Activity. Increasingly higher odds of having anxiety/depression compared with Stable High Activity were observed across the types of sequences, by increasing proportions of SA/DP. Stable High SA/DP sequences were less likely than Stable High Activity to be prescribed MS drugs in the MS diagnosis year (OR 0.61; 95% CI 0.47 to 0.78). All types of sequences had higher disposable income in the final study year than the first, except for Stable High SA/DP sequences (Swedish Krona 4669, 95% CI -1892 to 11 230).ConclusionsDiversity in working life was influenced by sociodemographic and clinical characteristics resulting in different activity and SA/DP patterns across the six identified types of working-life sequences.

Project description:BackgroundMultiple sclerosis (MS) is a leading cause of disability among young adults and effects considerable social and economic burdens. Data of MS incidence in China at the national level is lacking. We conducted the first nationwide hospital-based study to estimate the incidence and hospitalization burden of MS in China.MethodsThis study is based on an administrative database of the National Hospital Quality Monitoring System, which covers all 1665 tertiary hospitals in mainland China. The "Medical Record Homepage" of all patients, including 346 variables including demographic characteristics, diagnoses, procedures, and expenses etc., were uniformly collected across each tertiary hospital via standard protocol. MS was defined by the 2010 International Panel criteria for MS and was identified by ICD-10 code (G35•0).FindingsWe identified 27,336 hospital admissions for 15,060 MS patients from 2016 to 2018; amongst these patients, 9,879 were newly diagnosed. The age- and sex-adjusted incidence per 100,000 person-years is 0•235 (95% confidence interval [CI] 0•230-0•240), with 0•055 (0•050-0•060) in children and 0•288 (0•282-0•294) in adults, respectively. The female to male ratio is 2•02; the peak disease onset is age of 40-49 years. Residents in high-latitude and high-altitude areas are more likely to develop MS (F = 8•99; p < 0•001). Prevalent comorbidities include hypertension (18•8%), diabetes (7•2%), stroke (14•7%), depression or anxiety (3•7%), and autoimmune disease (2•3%). Through 2016-2018, 104 adults and 2 children died, with a hospital mortality rate of 9•9 per 1,000 person-years.InterpretationFor the first time, we obtain the national incidence of MS as 0.055 in children and 0.288 in adults per 100,000 in China. The geographical distribution of MS incidence presented a north-south latitude gradient and a west-east altitude gradient.FundingNational Science Foundation of China (81801199, 91642205, and 81830038); Advanced Innovation Center for Human Brain Protection, Capital Medical University, Beijing.

Dataset Information

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.

Publications

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.

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