"I'm walking into the unknown": Qualitative insights into how emotions and lived experience related to multiple sclerosis diagnosis impact on decisions to pursue disease modifying treatment.

INTRODUCTION: People with Relapsing Remitting Multiple Sclerosis (RRMS) are increasingly included as active participants in shared decision making around their treatment options. Choosing a first disease modifying treatment (DMT) is a complex process that often takes place soon after a diagnosis has been given. Patients therefore are often required to make difficult decisions at a time when they are still coming to terms with their illness. This study investigated the views and experiences of recently diagnosed patients with RRMS when they were making their initial DMT choice. METHOD: This was a qualitative study involving in-depth semi-structured interviews with patients with RRMS in a National Health Service (NHS) setting in the United Kingdom. Data were collected from 6 patients and analysis was guided by an Interpretive Phenomenological Analysis (IPA) approach. RESULTS: Initial reactions to diagnosis were characterized by strong emotions and a feeling of despair and hopelessness. Subsequently the DMT decision was shaped by multiple considerations around maintaining normality, and restoring hope and control over one's life whilst reconciling uncertainty around efficacy. Considering the future with a DMT elicited reflections around employment and family planning. CONCLUSION: Emotions and lived experience related to recent MS diagnosis can impact on the initial DMT decision in number of ways. Health care professionals need to understand the lived experience of patients making DMT decisions soon after diagnosis when engaging in shared decision making.

Use of programme theory to understand the differential effects of interventions across socio-economic groups in systematic reviews-a systematic methodology review.

BACKGROUND: Systematic review guidance recommends the use of programme theory to inform considerations of if and how healthcare interventions may work differently across socio-economic status (SES) groups. This study aimed to address the lack of detail on how reviewers operationalise this in practice. METHODS: A methodological systematic review was undertaken to assess if, how and the extent to which systematic reviewers operationalise the guidance on the use of programme theory in considerations of socio-economic inequalities in health. Multiple databases were searched from January 2013 to May 2016. Studies were included if they were systematic reviews assessing the effectiveness of an intervention and included data on SES. Two reviewers independently screened all studies, undertook quality assessment and extracted data. A narrative approach to synthesis was adopted. RESULTS: A total of 37 systematic reviews were included, 10 of which were explicit in the use of terminology for 'programme theory'. Twenty-nine studies used programme theory to inform both their a priori assumptions and explain their review findings. Of these, 22 incorporated considerations of both what and how interventions do/do not work in SES groups to both predict and explain their review findings. Thirteen studies acknowledged 24 unique theoretical references to support their assumptions of what or how interventions may have different effects in SES groups. Most reviewers used supplementary evidence to support their considerations of differential effectiveness. The majority of authors outlined a programme theory in the "Introduction" and "Discussion" sections of the review to inform their assumptions or provide explanations of what or how interventions may result in differential effects within or across SES groups. About a third of reviews used programme theory to inform the review analysis and/or synthesis. Few authors used programme theory to inform their inclusion criteria, data extraction or quality assessment. Twenty-one studies tested their a priori programme theory. CONCLUSIONS: The use of programme theory to inform considerations of if, what and how interventions lead to differential effects on health in different SES groups in the systematic review process is not yet widely adopted, is used implicitly, is often fragmented and is not implemented in a systematic way.