Our objective was to explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers, and health care professionals in the context of multidisciplinary ALS care. We undertook semi-structured interviews with 10 patients with ALS, their caregivers (n = 10) and their ALS health care professionals (n = 10), and held a focus group (n = 20). We transcribed the audio-taped interviews and analysed all data thematically. Participants indicated that in certain circumstances case management can have an added value. They identified factors for receptiveness to case management: adequacy of usual care, rate of disease progression, and degree of social network support and personal factors of patients and spousal caregivers. Participants valued the time for consultation, house calls and proactive approach of the case manager. Patients with ALS and caregivers appreciated emotional support, whereas professionals did not mention the importance of emotional support by the case manager. In conclusion, ALS teams can consider implementation of valued aspects of case management (accessibility, ample time, proactive approach, emotional support) in the usual multidisciplinary ALS care. Additional support might be provided to patients with rapidly progressive disease course, passive coping style and small social network.

BackgroundThe aim of this systematic literature review was to assess what dissemination strategies are feasible to inform and educate patients about recommendations (also known as guidelines).MethodsThe search was performed in February 2016 in PubMed, Ebsco/PsycINFO, Ebsco/CINAHL and Embase. Studies evaluating dissemination strategies, involving patients and/or reaching patients, were included. A hand search and a search in the grey literature, also done in February 2016, were added. Searches were not restricted by language or publication type.Publications that referred to (1) guideline(s) or recommendation(s), (2) dissemination, (3) dissemination with patients/patient organisations and (4) dissemination to patients/patient organisations were included in this article. Criteria 1 AND 2 were mandatory together with criteria 3 OR 4.ResultsThe initial search revealed 3753 unique publications. Forty-seven articles met the inclusion criteria and were selected for detailed review. The hand search and grey literature resulted in four relevant articles. After reading the full text of the 47 articles, 21 were relevant for answering our research question. Most publications had low levels of evidence, 3 or 4 of the Oxford levels of evidence. One article had a level of evidence of 2(b).This article gives an overview of tools and strategies to disseminate recommendations to patients. Key factors of success were a dissemination plan, written at the start of the recommendation development process, involvement of patients in this development process and the use of a combination of traditional and innovative dissemination tools. The lack of strong evidence calls for more research of the effectiveness of different dissemination strategies as well as the barriers for implementing a strategic approach of dissemination.ConclusionOur findings provide the first systematic overview of tools and strategies to disseminate recommendations to patients and patient organisations. Participation of patients in the whole process is one of the most important findings. These findings are relevant to develop, implement and evaluate more (effective) dissemination strategies which can improve health care.Electronic supplementary materialThe online version of this article (doi:10.1186/s13012-016-0447-x) contains supplementary material, which is available to authorized users.

Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective. Implications for Rehabilitation FSHD has a major impact on people's lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals. Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively. It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication.

Fatigue is a severe problem in FSHD and has a huge impact on patients' lives. Patients should be helped to reduce fatigue, for instance by offering evidence-based therapies such as aerobic exercise training or cognitive behavioral therapy. Implications for Rehabilitation Fatigue has significant influence on the quality of lives and participation of people with FSHD. Patients with FSHD are insufficient supported in coping with their fatigue. More attention for fatigue in patients with FSHD in rehabilitation is needed, for instance by a broader implementation of aerobic exercise training or cognitive behavioral therapy.

BackgroundMany persons affected with poliomyelitis develop post-polio syndrome (PPS) later in their life. Recently, the effectiveness of Exercise Therapy (ET) and Cognitive Behavioural Therapy (CBT) for PPS has been evaluated in a randomized controlled trial, but did not show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations. The aim of this explorative study was to gain insight in the perceived effects and experiences of the interventions from the perspectives of the patients and therapists.MethodsQualitative data were collected through semi-structured interviews with 17 patients and 7 therapists. All participants were involved in the trial. A thematic analysis of the data was performed.ResultsSome patients experienced a short term enhanced endurance and a better use of energy during the day. However, in general patients did not experience a long lasting reduction of fatigue from the CBT or ET. Mainly patients of the CBT, but also some patients of the ET described an increase of self-esteem and self-acceptance. As a result, patients were sometimes better able to perform physical activities during the day. In contrast to the CBT, the ET was in general perceived by the patients as an intensive therapy, which was difficult to fit into their daily routine. Therapists of both the CBT and the ET struggled with a low intrinsic motivation of the patients in the study. This made it sometimes difficult for the therapists to follow the protocol.ConclusionConfirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with feasible interventions; they should fit the patients’ needs on a practical (fit into their daily routine) and mental (fit their need for support) level.