One of the often unadressed consequences of an MS diagnosis is that you need to gain a new and unwanted expertise: you need to debug the services of your health care provider. Irrespective of whether you suffer from MS-related fatigue, walking difficulties or reduced vision, you will need referrals for rehabilitation services such as occupational, physical or vocational therapy or for adjusting splints or electric wheelchairs. Unfortunately, it is often a hassle for pwMS to gain access to the services they are entitled to. This is a hidden source of discrimination as it often requires quite a lot of administrative persistence and eloquence to gain access. Not speaking of the time spent on managing switchboards. Although I lack objective evidence, I feel these hurdles are likely to render people with a lower socio-economic background less likely to attend or complete rehab schemes.
It is very difficult to find objective data on the association between socioeconomic status, red tape hurdles and the extent of which people with MS access rehab services. It is even more difficult to quantify the extent of red tape. There are some limited data from the cardiology field. Cardiac rehabilitation after a myocardial infarct is one of the biggest determinants of functional recovery and thus mortality. Nonetheless, socioeconomic context (read: postcode) and socio-economic status have been associated with reduced participation in cardiac rehabilitation. The results of a study randomising people to financially incentivised cardiac rehabilitation vs. usual care among low-socioeconomic status patients suggested health care providers should consider boosting participation by providing financial incentives. In the UK, I have experienced myself how difficult it could be to get pwMS referred for physical therapy. Very often new paper referrals were necessary for problems that required ‘maintenance physical therapy’ such as spasticity.
In the Netherlands, red tapes are the equivalent of purple crocodiles. This association is based on an epic advertisement of – strangely – an insurance company. In short, the advertisement consists of a single sketch in which a mother and her daughter appear at the reception desk of a public swimming pool. The mother explains to the receptionist that the previous day her daughter left her inflatable purple crocodile at the swimming pool. The receptionist hands the mother a form which must be filled out on both sides and handed in the following day between 9 and 10 AM, while the purple crocodile which her daughter had lost is seen standing in a corner of the reception desk. The mother then points at the purple crocodile and says that “it’s right there.” The receptionist says in a sneering tone “yes, it is right there” but takes no action.
Have you had difficulties accessing rehab or other MS-specific services through your health care provider? Why? Do you agree it could be especially a hurdle for people with MS with a low socio-economic status? Please share!
Disclaimer: Please note that the opinions expressed here are those of dr. Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Financial Incentives to Increase Cardiac Rehabilitation Participation Among Low-Socioeconomic Status Patients: A Randomized Clinical Trial
Diann E Gaalema, Rebecca J Elliott, Patrick D Savage, Jason L Rengo, Alex Y Cutler, Irene Pericot-Valverde, Jeffrey S Priest, Donald S Shepard, Stephen T Higgins, Philip A Ades
PMID: 31078475, DOI: 10.1016/j.jchf.2018.12.008
Objectives: This study sought to examine the efficacy of financial incentives to increase Medicaid patient participation in and completion of cardiac rehabilitation (CR).
Background: Participation in CR reduces morbidity, mortality, and hospitalizations while improving quality of life. Lower-socioeconomic status (SES) patients are much less likely to attend and complete CR, despite being at increased risk for recurrent cardiovascular events. Methods: A total of 130 individuals enrolled in Medicaid with a CR-qualifying cardiac event were randomized 1:1 to receive financial incentives on an escalating schedule ($4 to $50) for completing CR sessions or to receive usual care. Primary outcomes were CR participation (number of sessions completed) and completion (≥30 sessions completed). Secondary outcomes included changes in sociocognitive measurements (depressive/anxious symptoms, executive function), body composition (waist circumference, body mass index), fitness (peak VO2) over 4 months, and combined number of hospitalizations and emergency department (ED) contacts over 1 year. Results: Patients randomized to the incentive condition completed more sessions (22.4 vs. 14.7, respectively; p = 0.013) and were almost twice as likely to complete CR (55.4% vs. 29.2%, respectively; p = 0.002) as controls. Incentivized patients were also more likely to experience improvements in executive function (p < 0.001), although there were no significant effects on other secondary outcomes. Patients who completed ≥30 sessions had 47% fewer combined hospitalizations and ED visits (p = 0.014), as reflected by a nonsignificant trend by study condition with 39% fewer hospital contacts in the incentive condition group (p = 0.079). Conclusions: Financial incentives improve CR participation among lower-SES patients following a cardiac event. Increasing participation among lower-SES patients in CR is critical for positive longer-term health outcomes.