The impact of quality of life on treatment preferences in multiple sclerosis patients

Abstract

IntroductionMultiple sclerosis (MS) is a demyelinating disorder with an unpredictable and often disabling course. MS symptoms are very heterogeneous and may lead to reduced physical, cognitive, and psychosocial functioning decreasing patients’ quality of life (QoL). Today, various disease-modifying treatments (DMTs) may prevent disease progression. However, it is increasingly complex to select the right therapy for a given patient and patient preferences should be considered when making treatment decisions. This study aimed to explore the main factors affecting patients’ preferences regarding MS treatment and health care.MethodsFive qualitative focus group interviews were carried out with a total of 40 participants from across Denmark. A semistructured question guide included questions that were identified in a systematic literature study about QoL and treatment preferences in patients with MS. The participants were asked to describe their disease experiences, their health-related QoL, and reasons behind their preferences with regard to treatment and care. The data were analyzed using content analysis and a constructivist approach.ResultsThe participants’ physical, cognitive, and psychosocial QoL and functioning were reduced by disease symptoms, treatment side effects, and mode of administration. Their ability to uphold meaningful role functioning was crucial to their treatment priorities. The preeminence of anticipated efficacy, ie, the patients’ hope that DMT might prevent disease deterioration in the future, was modified by their present QoL and functioning when ultimately framing their treatment preferences. There was an unmet information and support need from neurology clinics, particularly at the time of diagnosis.ConclusionThe participants’ treatment preferences were influenced by a matrix of treatment and QoL-related factors and evolved with time and along with personal and professional changes in life. The patients preferred to receive a clear recommendation of DMT from the neurologist taking into account their individual functioning and present QoL priorities.

Management of relapsing–remitting multiple sclerosis in Qatar: an expert consensus

“…Preference for oral vs. injectable treatment, frequency of administration and ability to accommodate monitoring requirements into a patient's lifestyle may also be important 79,81 . Treatment preferences themselves are modified by patients' current mode of treatment and disability status 82 .…”

Health‐related quality of life in patients undergoing TURP: Translating evidence into urological nursing practice

“…19 This domain was defined as patients' reflection on the given treatment relating to its benefits, harms, costs, clinical decision, clinical situation, and choice to a particular treatment. 75 In this context, patient preferences and healthcare-seeking behavior pertaining to BPH treatment were varied. 75 In this context, patient preferences and healthcare-seeking behavior pertaining to BPH treatment were varied.…”

“…74 These aspects were affected by the effect of treatments and personal changes in life. 75 In this context, patient preferences and healthcare-seeking behavior pertaining to BPH treatment were varied.…”

<p>Patient Attitudes to Routine Cognitive Testing in Multiple Sclerosis</p>

“…Even in mild CD, psychosocial, professional and daily functioning may be affected. [3][4][5][6][7] MS-related CD may involve any of the six core functional domains: perceptual-motor function, language, learning and memory, executive function, complex attention and social cognition and emotion regulation. [1][2][3]5,[8][9][10] Sub-types may co-exist, and CD often interacts with physical and affective MS symptoms such as stress, depression, fatigue or pain, hampering a clear establishment of causalities and confounders.…”

“…In later years, it has become increasingly clear that CD may affect MS patients' social-and family lives, their self-perception and emotional well-being, daily activities and occupational functioning. 2,3,[5][6][7][8][9][11][12][13][14][15][16][23][24][25][26][27] Yet, most studies assessing CD-related QoL have focused either on one specific cognitive domain (eg, executive function), and/or the impact of CD on a specific function such as internet shopping. 8,9,14,15,18,23,25,26 Only few have explored the perceived overall impact of CD on patients' QoL from the patient perspective.…”