Migraine is a common disease which causes significant burden to individuals, in terms of personal suffering and activity reduction, and to societies, in terms of disease cost. The purpose of this study is to identify the most relevant psychosocial difficulties related to migraine, the variables associated with them and the most relevant determinants of their evolution over time. MEDLINE and PsychINFO were searched for studies published in English between 2000 and 2010 that examined psychosocial difficulties in persons with migraine with and without aura, from clinical trials and observational studies. Information on the description of each difficulty, its determinants of onset and change over time and associated variables were extracted and categorized at a higher level. In total, 34 difficulties have been collected from 51 papers: the most frequent were reduced vitality and fatigue, emotional problems, pain, difficulties at work, general physical and mental health, social functioning and global disability. Evidence exists that pharmacological treatments have an impact toward improvement in patients’ difficulties, in particular emotional problems, physical and mental health, difficulties with employment and global disability. Migraine treatments and decreased headaches frequency are the major determinants of improvements in psychosocial difficulties, while no information is available for determinants of worsening; understanding the role of such factors is of primary public health relevance, given the high prevalence and the relevant personal and societal costs of migraine.
We assess the knowledge available on the difficulties experienced by multiple sclerosis (MS) patients in work-related activities. A literature review was carried out using the keywords 'multiple sclerosis' and 'employment' or 'work' through PubMed and EMBASE. Papers reporting patient-derived data on difficulties at work as primary or secondary outcome measures and published in the period 2002-December 2011 were searched. A total of 26 papers were selected, for a total of 32 507 patients (mean age 46.2 years; 42.1% with relapsing-remitting MS). Most papers reported observational studies or cross-sectional surveys focused on health-related quality of life and MS costs. Symptoms more frequently addressed are fatigue, mobility and cognitive impairments. Limited research has been carried out on the working environment. We found a relatively small number of papers published in the last 10 years on the difficulties that patients with MS can experience at work, and this kind of information always appeared as a secondary outcome. In general, it is possible to affirm that MS has a strong impact on patients' employment status, as the mean unemployment rate was 59%. Research on factors promoting maintenance of remunerative employment is required.
The aim of this study is to evaluate the burden of caregivers of patients with disorders of consciousness (DOCs), considering psychosocial difficulties, health condition and financial aspects. This is an observational multi-centre study. Four hundred and eighty-seven participants were assessed using the Caregiver Needs Assessment, Family Strain Questionnaire, Short Form 12, Spielberger State Trait Anxiety Inventory-Y, Beck Depression Inventory, Prolonged Grief Disorder Questionnaire and Coping Orientations to Problem Experiences. The sample had lower scores both in Physical (M = 49.85, SD = 7.66) and Mental (M = 39.37, SD = 12.90) health and a higher level of anxiety (p < 0.001) in comparison to the Italian normative sample. More than half of the sample manifested a high level of depressive symptoms (59.5%) and 27.6% satisfied criteria for Prolonged Grief Disorder. This sample reported needs to know the disease of their beloved, high needs for information and communication, several problems in social involvement and in emotional burden. The most frequently adopted coping strategies are acceptance, turning to religion, positive reinterpretation and planning. Finally, 40.2% of caregivers report to earn a net income of less than 17 000 euros per year. These results showed a high burden related to providing care to patients with DOCs. This study sets the scene to plan comprehensive support strategies for caregivers in order to diminish level of burden.
Objectives To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS). Materials and methods The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form‐12, Beck Depression Inventory and State‐Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall–Wallis test and factors associated with the overall levels of burden with UNIANOVA. Results In total, 487 participants were enrolled. Daily hours of care‐giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P=0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post‐acute patients reported low scores in mental health (median = 33.8; IQR = 23.1–47.6) and higher state of anxiety (median = 54; IQR = 45–62), whereas caregivers of long‐term patients expressed more needs in social involvement (median = 19; IQR = 15–22). Conclusions Burden and distress were high for all caregivers of VS and MCS patients. As care‐giving is a long‐term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.
An Australian case series study demonstrated the effectiveness of the REsilience and Activities for every DaY for people with multiple sclerosis (READY for MS), a resilience group training program based on Acceptance and Commitment Therapy, in improving quality of life in people with MS. This study aimed to evaluate the feasibility and acceptability of the Italian READY for MS program, and to preliminary assess its efficacy when compared to an active control intervention (group relaxation). Single-blind phase II randomized controlled trial (RCT) and nested qualitative study (ISRCTN registration number: 38971970). Health-related quality of life (primary study outcome), mood, resilience, psychological flexibility and its protective factors were measured at baseline, after seven, 12 and 24 weeks. READY participants completed the purpose-built satisfaction questionnaire after 12 weeks. After trial completion, the control group also received READY. One-to-one participant interviews were conducted within three months of finishing the READY groups. Four intervention groups were conducted with 39 participants (20 READY, 19 relaxation). Two patients (READY) withdrew before beginning the intervention due to unexpected work commitments. Feasibility and acceptability of READY were good, with high participant engagement and satisfaction. No statistical effects of READY were detected vs relaxation. Thirty participants were interviewed (18 READY; 12 relaxation + READY). Content data analysis revealed seven overarching themes: “Attitudes towards participation”; “Perceptions of program composition”; “Program impacts on life domains”; “Program active elements”; “Program improvement trajectories”; “Program differences and similarities”; “Suggested READY improvements”. READY was well accepted by MS patients with varied socio-demographic and clinical characteristics. Qualitative (but not quantitative) data provided evidence in favour of READY. Our findings will inform methodological and intervention refinements for the multi-centre RCT that will follow.