Quality of multiple sclerosis out-patient health care services with focus on patient reported experiences

Abstract

BackgroundTo investigate multiple sclerosis (MS) patients’ satisfaction with out-patient follow-up in a general neurological hospital department. Patients with definite MS living in Vest-Agder county, Norway were invited to answer a questionnaire comprising one question regarding overall satisfaction, and 24 questions regarding demographics, disease characteristics, and experiences with different aspects of the health care services.ResultsOut of 330 invited patients, 159 responded (48%). Mean overall satisfaction with health care was 3.5 (SD = 1.03) on a 1–5 Likert scale (1 = not at all, 5 = to a very large extent). The best sub scores were given on confidence in the physician’s competence (mean = 4.01), the physician speaks in an understandable way (mean = 4.07), expectation of good treatment (mean = 3.72), and perception of being submitted to wrong treatment (mean = 1.5). The worst scores were given on satisfaction with frequency of outpatient appointments (mean = 2.89) and delay of outpatient appointments (mean = 3.07). Four factors were associated with high overall satisfaction; receiving the disease modifying drug natalizumab (B = 0.549, p = 0.004), satisfaction with frequency of outpatient appointments (B = 0.242, p < 0.001), experience that the physician facilitates talking about what the patient finds important (B = 0.218, p = 0.001), and confidence with the physician’s competence (B = 0.453, p < 0.001).ConclusionThe patients were rather satisfied with the content of follow-up, and less satisfied with the structure. Regular and predictable contact with a trustworthy physician that facilitates that the patient is able to talk about what is important was associated with higher overall satisfaction.Electronic supplementary materialThe online version of this article (doi:10.1186/s13104-017-2568-y) contains supplementary material, which is available to authorized users.

Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis

“…Disease progression discussions can also help patients to understand the need for certain clinical tests which they might otherwise feel are invasive and unnecessary, and can contribute to the development of a trusting relationship in which patients do not feel that their HCP is withholding information from them [20,26,28]. These discussions are important for creating realistic treatment expectations, leading to improved patient satisfaction and engagement, and enabling shared decisionmaking [5,28,[35][36][37][38][39]. In addition, they can help to motivate patients to take responsibility for managing their disease [40], as they begin to better understand the importance of actions like regular physiotherapy appointments, eating healthy, exercising frequently, and staying mentally active.…”

Patient Satisfaction in a Multidisciplinary Multiple Sclerosis Care Unit: A Swiss Single-centre Study

“…These findings support the recently promoted specialized multidisciplinary approach for MS. 1,9 Using patient satisfaction as the primary measure of quality, these findings indicate an overall improvement in the perceived clinic quality and the care it is offering since patient satisfaction has repeatedly been shown to be a validated proxy for quality of care. [14][15][16] Prior work suggests that more satisfied patients are more likely to comply with treatment, to actively participate, 15 and to be more optimistic about their future. 16 These aspects are especially relevant for patients with a chronically impairing disease such as MS.…”

The reliability and validity of the Turkish version of the multiple sclerosis impact scale-29

“…PROs include symptoms, daily living activities, quality of life, patient satisfaction and compliance to reveal the patient’s comprehensive clinical status [ 10 , 11 ]. An appropriate PRO can detect changes in the ability of an individual with MS to perform activities of daily living [ 12 ]. There are MS-specific and non-MS-specific PROs used in individuals with MS [ 13 ].…”