Knowledge of disease and adherence in adult patients with haemophilia

Summary. Patients with moderate and severe haemophilia are evaluated on a regular basis at their haemophilia centres but patients with mild haemophilia are seen less often because of fewer problems related to their disease. The needs of patients with milder forms of haemophilia, however, are often underestimated, both by the patient and staff at healthcare facilities. This study evaluated the knowledge of disease and adherence to treatment among patients with severe, moderate and mild haemophilia. This was a prospective multicentre study performed in Haemophilia Centres in Scandinavia. A total of 413 (67%) of 612 patients aged >25 years with mild, moderate and severe haemophilia completed a self‐administered questionnaire. The mean age of the respondents was 49.7 years (range 25–87 years). Of the 413 respondents, 150 had a mild, 86 had a moderate and 177 had a severe form of haemophilia. A total of 22 (5%) patients did not know the severity of their disease, and 230 (56%) patients knew the effect of factor concentrate in the blood. Of the 413 respondents, 53 (13%) of the cohort never treated a haemorrhage. Patients with mild haemophilia, P ≤ 0.001, were the least likely to treat a haemorrhage. The relative number of patients who were afraid of virus transmission by factor concentrate was about similar in the three groups, 27% of those with severe haemophilia, 26% with moderate and 24% with mild haemophilia. This study shows that the amount of knowledge among haemophilia patients about their disease and treatment is somewhat limited, and demonstrates the importance of continually providing information about haemophilia and treatment, especially to patients with a mild form of the disease.     

The ParkinsonNet trial: Design and baseline characteristics

The companion paper describes how implementation of professional networks (ParkinsonNet) may improve the quality and efficiency of allied health care in Parkinson's disease (PD). We designed a cluster‐randomized controlled trial to evaluate this ParkinsonNet concept for one allied health discipline, namely physical therapy. Here we describe the study design and baseline characteristics. The design fully complies with the CONSORT criteria. Sixteen regions in the Netherlands were randomly divided into eight experimental regions where a ParkinsonNet was implemented, and eight control regions where the organization of care was left unchanged (usual care). Participating patients were followed for 6 months to evaluate the implementation process, health benefits and costs of the intervention. In the ParkinsonNet regions, 46 therapists were trained and 358 patients were included. In the usual care regions, 341 patients were included. Baseline characteristics of participants in the ParkinsonNet and control clusters were comparable. With 699 participating patients, this is the largest allied health study in PD to date. © 2010 Movement Disorder Society     

Effectiveness of physiotherapy in Parkinson's disease: the feasibility of a randomised controlled trial

To study the feasibility of a large randomised controlled trial (RCT) evaluating the effectiveness of physiotherapy in Parkinson's disease (PD), 173 patients were asked to participate in a study with random allocation to best practice physiotherapy, or to no physiotherapy. The primary outcome measures were the Parkinson's disease questionnaire-39, the Parkinson activity scale, and a patient preference outcome scale (PPOS). Only 14% of the patients could be included in the study. The PPOS showed the largest effect size (0.74) with a significant group effect (p<0.05). Specific alterations to the study design to ensure successful RCTs in this field are recommended.     

Allied health care interventions and complementary therapies in Parkinson's disease

Allied health care and complementary therapies are used by many patients with Parkinson's disease (PD). For allied health care, supportive scientific evidence is gradually beginning to emerge, and interventions are increasingly integrated in the treatment programs for PD patients. To evaluate whether such multidisciplinary programs are justifiable, we review the literature of allied health care and complementary therapies in PD. According to the level of available evidence, we provide recommendations for clinical practice. Finally, we discuss the need for an improved organization of allied health care, and identify topics for future research to further underpin the pros and cons of allied health care and complementary therapies in PD.     

Physical therapy and occupational therapy in Parkinson's disease

Current medical management is only partially effective in controlling the symptoms of Parkinson's disease. As part of comprehensive multidisciplinary care, physical therapy and occupational therapy aim to support people with Parkinson's disease in dealing with the consequences of their disease in daily activities. In this narrative review, we address the limitations that people with Parkinson's disease may encounter despite optimal medical management, and we clarify both the unique and shared approaches that physical therapists and occupational therapists can apply in treating these limitations.     

Latanoprost in the treatment of eyelash alopecia in alopecia areata universalis

Objectives The aim of this study was to test the efficacy of latanoprost in eyelash alopecia areata (AA). Design This study is a 2‐year prospective, non‐blinded, non‐randomized, bilateral eyelash alopecia controlled study. Setting The setting of this study was Trichology Unit, Virgen Macarena University Hospital, Seville, Spain. Patients We conducted a survey of 54 subjects with AA universalis treated with the protocol of the Trichology Unit of our Department. Control group comprised 10 subjects who received injections of 0.5 mg/cm² of triamcinolone acetonide (TAC) in their eyebrows and 1 mg/cm² of TAC injections in affected scalp. The treatment group included 44 subjects who received the same treatment as the control group in scalp and eyebrows but they also applied a drop of latanoprost 0.005% (50 μg/mL) ophthalmic solution in their eyelid margins every night. Subjects were reviewed every 3 months for 2 years. Results Forty subjects finished the study and four subjects were lost to follow‐up. In the treatment arm of this study, the course was well tolerated and uncomplicated. Both investigators and patients evaluated the regrowth. The results we obtained were: complete regrowth in 17.5%, moderate regrowth in 27.5%, slight regrowth in 30% and without response in 25%. Moderate and total regrowth constituted a cosmetically acceptable response. The therapy was continuous and the response remained without any side effects. No patients had cosmetically acceptable eyelash regrowth in the control group. Conclusions Latanoprost may be an effective drug in the treatment of eyelash AA because it induces acceptable responses (total and moderate) in 45% of the patients. A formal, blinded prospective unilateral controlled study will permit further understanding about this promising therapeutic agent for eyelash AA.