Alicia Ault

June 14, 2016

NATIONAL HARBOR, Maryland — Individuals with multiple sclerosis (MS) want to hear more from their physicians about wellness issues, such as diet, exercise, stress, and the effects of aging, a survey has found.

Patients "want information about things that go beyond the symptoms and medications," Phillip Rumrill, PhD, CRC, professor of rehabilitation counseling, Kent State University, Ohio, told Medscape Medical News. "They're wanting information about diet and nutrition, they're wanting information about exercise, about alternative and complementary therapies," he said.

The patients surveyed are "looking for solutions that go outside the traditional healthcare service delivery milieu," he said.

Dr Rumrill is an investigator in a multipronged look aimed at identifying MS patients' healthcare priorities. He and coinvestigator Malachy Bishop, PhD, CRC, professor of rehabilitation counseling, at the University of Kentucky, Louisville, presented interim results here at the Consortium of Multiple Sclerosis Centers (CMSC) 2016 Annual Meeting.

The researchers solicited survey respondents in cooperation with the National Multiple Sclerosis Society (NMSS) and the North America Research Committee on Multiple Sclerosis patient registry, both online and through regular mail. They also conducted a comprehensive literature review and held focus groups with NMSS members.

Dr Rumrill and Dr Bishop reported results from the online survey, which comprised 1274 respondents. The median age was 53 years, with a range of 18 to 87 years. Most respondents were white, female, and married and were both high-income (with a quarter reporting household income of more than $100,000) and highly educated. Half of the respondents lived in a suburban area, and two thirds had relapsing-remitting disease.

The full survey data include about 3000 people and is more diverse, said Dr Bishop. He and his colleagues are writing up all of their findings and are aiming to have them published soon, he told Medscape Medical News.

Patients Not Asked to Evaluate Care

Despite the somewhat skewed demographic, the initial survey results still offer physicians some valuable information, Dr Bishop and Dr Rumrill said.

Eighty-eight percent of those surveyed said they received their MS care through a neurologist. Patients living in urban areas reported no difficulty finding care, but those in suburban and rural areas said there were not enough MS services. Seventy-five percent said they spent 30 minutes or less with their physician at each visit but that it was the right amount of time.

Cost of MS care was a big concern to 70% of the survey respondents — even though the group skewed higher-income and insured. Dr Bishop said that half of the people in the separately conducted focus groups said that the cost was a top priority for them.

Satisfaction with care was very high, but, interestingly, only 46% said that their physician had given them the opportunity to formally evaluate their care. That seems like a low number, said Dr Rumrill.

He was equally struck that only 64% of respondents said that getting a chance to evaluate care was important or very important to them. He thought that number might be higher.

Survey respondents were also asked to rate the importance and frequency of interactions and communications with their physicians. Most gave high marks to their doctors for answering questions, explaining about tests and results, giving information about medications and side effects, and reminders about tests and procedures. Clinicians were also rated highly for showing an interest in the patient's concerns and questions.

But far fewer respondents were satisfied with the physician's discussion about prevention of illness or the cost of various tests. And 60% to 70% of patients said that talking about their sexual function, how their family was coping, and complementary and alternative medicine was important.

However, only about 20% said their physician talks to them about sexual function, and 30% said their family was discussed. Just under 40% said they'd had discussions about complementary and alternative medicine.

The study was sponsored by the National Multiple Sclerosis Society. Dr Bishop and Dr Rumrill have disclosed no relevant financial relationships.

Consortium of Multiple Sclerosis Centers (CMSC) 2016 Annual Meeting: Abstract CC06. Presented June 3, 2016.

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