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1.
Eur J Neurol ; 27(8): 1510-1529, 2020 08.
Article in English | MEDLINE | ID: mdl-32469447

ABSTRACT

BACKGROUND AND PURPOSE: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. METHODS: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score > 6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. RESULTS: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. CONCLUSIONS: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.


Subject(s)
Multiple Sclerosis, Chronic Progressive , Advance Care Planning , Caregivers , Humans , Palliative Care
2.
Eur J Neurol ; 26(1): 41-50, 2019 01.
Article in English | MEDLINE | ID: mdl-30035845

ABSTRACT

BACKGROUND AND PURPOSE: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS. METHODS: A mixed methods approach was used: an international online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers, focus group meetings of Italian and German MS patients and caregivers. RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey and 934 from seven countries were analysed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent) and 160 (28%) on outcomes. Five focus group meetings (three of MS patients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues. CONCLUSIONS: Multiple sclerosis patient and caregiver involvement was resource and time intensive, but rewarding. It was the key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes.


Subject(s)
Caregivers , Guidelines as Topic , Multiple Sclerosis/therapy , Palliative Care/standards , Patients , Adult , Advance Care Planning , Aged , Community Participation , Europe , Female , Humans , Male , Middle Aged , Multiple Sclerosis/rehabilitation , Patient Care Team , Surveys and Questionnaires , Treatment Outcome
3.
Mult Scler ; 13(1): 87-94, 2007 Jan.
Article in English | MEDLINE | ID: mdl-17294616

ABSTRACT

The current study examines the implications of responsibility and obligation on separation-individuation processes and the appearance of various symptoms of psychological distress in adolescent children of multiple sclerosis (MS) parents. We examined 56 children, between the ages of 10 and 18 years, each with a parent with MS. The results were compared to a control group of 156 children whose parents were healthy. Children's emotions were examined by means of two questionnaires: Youth Self Report (YSR), and Separation Individuation Test of Adolescence (SITA). It was found that children with a MS-affected parent displayed higher levels of depression and anxiety than children from the control group. Furthermore, children in the study group reported a greater degree of separation anxiety, compared to the control group. We conclude with clinical recommendations for developing therapeutic interventions for adolescents to MS-affected parents, as well as for their ill and healthy parents.


Subject(s)
Anxiety, Separation/psychology , Individuation , Multiple Sclerosis/psychology , Object Attachment , Parent-Child Relations , Adolescent , Adolescent Behavior/psychology , Adult , Affective Symptoms/psychology , Denial, Psychological , Family Health , Female , Humans , Male , Narcissism
4.
J Arthroplasty ; 10(5): 693-4, 1995 Oct.
Article in English | MEDLINE | ID: mdl-9273385

ABSTRACT

A different technique for closed reduction of the dislocated total hip arthroplasty is described. The maneuver is effective and efficient, may be performed without an assistant, and reduces potential risks to the surgeon.


Subject(s)
Hip Dislocation/therapy , Hip Prosthesis/adverse effects , Hip Dislocation/etiology , Humans , Methods
5.
Fertil Steril ; 35(2): 218-21, 1981 Feb.
Article in English | MEDLINE | ID: mdl-7202746

ABSTRACT

In vitro sperm migration assays were performed using bovine spermatozoa and cervical mucus. Experiments were designed to test the effects of storage temperature, method of storage, duration of storage, and source of cervical mucus. Significant variation in migration of spermatozoa was due both to differences in mucus samples and to short-term mucus storage at temperatures ranging from ambient to -196 degrees C. The parallel-orienting effect of cervical mucus on migrating sperm was shown to be a major factor in quantitative assays based upon migration distance. Thus, comparisons of migration among different specimens of semen likely will be biased unless the tests are run simultaneously. Implications of these results are discussed relative to the performance of quantitative sperm migration assays in the clinical or research laboratory.


Subject(s)
Cervix Mucus/physiology , Preservation, Biological , Sperm Motility , Animals , Cattle , Female , Male , Temperature , Time Factors
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