ArticleBMC neurology2013
What do multiple sclerosis patients and their caregivers perceive as unmet needs?
Article in BMC neurology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04979546 (Using Patient-Reported Outcomes To Improve the Care of People With Multiple Sclerosis), which is not on this map. Cited by 28 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Using Patient-Reported Outcomes To Improve the Care of People With Multiple Sclerosis: A Randomized Trial
Who cites it
28 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Work Barriers and Job Adjustments of People with Multiple Sclerosis: A Systematic Review.Journal of occupational rehabilitation · 2023Pooled it
- The effect of nurse practitioner (NP-led) care on health-related quality of life in people with multiple sclerosis - a randomized trial.BMC neurology · 2022Trial
- A mixed methods cross-sectional study of peer support needs and barriers among multiple sclerosis caregivers in Ireland.Journal of health psychology · 2026Article
- A scoping review assessing the usability of digital health technologies targeting people with multiple sclerosis.NPJ digital medicine · 2024Article
- Priority setting: women's health topics in multiple sclerosis.Frontiers in neurology · 2024Article
- Stakeholders' Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study.JMIR rehabilitation and assistive technologies · 2023Article
- Developing a patient care pathway for emotional support around the point of multiple sclerosis diagnosis: A stakeholder engagement study.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Evaluating the impact of patient-reported outcome measures on depression and anxiety levels in people with multiple sclerosis: a study protocol for a randomized controlled trial.BMC neurology · 2023Article
- Aging in multiple sclerosis: from childhood to old age, etiopathogenesis, and unmet needs: a narrative review.Frontiers in neurology · 2023Review
- Perceived facilitators, needs, and barriers to health related quality of life in people with multiple sclerosis: a qualitative investigation.Journal of patient-reported outcomes · 2022Article
- Palliative care needs of patients with multiple sclerosis in southeast Iran.BMC palliative care · 2021Article
- Informing MS patients on treatment options: a consensus on the process of consent taking.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2020Article
- The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.Patient preference and adherence · 2020Article
- The Multiple Sclerosis Care Unit.Multiple sclerosis (Houndmills, Basingstoke, England) · 2019Review
- Influence of Cognitive and Motor Abilities on the Level of Current Functioning in People with Multiple Sclerosis.Zdravstveno varstvo · 2019Article
- Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire.Patient preference and adherence · 2019Article
- Article
- The most important psychological and psychosocial needs of Polish multiple sclerosis patients and their significant others.Neuropsychiatric disease and treatment · 2017Article
- Using a multidimensional unfolding approach to assess multiple sclerosis patient preferences for disease-modifying therapy: a pilot study.Patient preference and adherence · 2017Article
- An evaluation of adherence in patients with multiple sclerosis newly initiating treatment with a self-injectable or an oral disease-modifying drug.Patient preference and adherence · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMultiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients.
methodsWe evaluated what MS patients and caregivers perceive as unmet needs and compared patients' opinions with caregivers' opinions using a multidimensional questionnaire. The questionnaire was specifically designed for the study, taking into account different aspects of the global care perceived by patients and care givers, such as information about MS, medical treatment and rehabilitation, patients' relationships with medical staff and their psychological and social life.
resultsWe administered the questionnaire to 497 patients and 206 caregivers. Results showed that the majority of participants were satisfied with medical staff but expressed a desire that staff be more forthcoming with information about MS. As for medical treatment concerns, more patients found there to be useful a multidisciplinary approach than caregivers did. Both required psychological support for patients but patients felt a greater need for it at the time of diagnosis, whereas caregivers felt it was required post-diagnosis. Both reported significant strains on patient relationships at work but no effect on other social interactions.
conclusionsA better understanding of MS patient needs, starting from the point of view of patients and caregivers, could have a great impact on quality of life and on management of the disease.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.