Patient perspective on decisions to switch disease-modifying treatments in relapsing-remitting multiple sclerosis.

BACKGROUND: There are now large cohorts of people with relapsing-remitting multiple sclerosis (pwRRMS) who have taken several Disease-Modifying Treatments (DMTs). Studies about switching DMTs mostly focus on clinical outcomes rather than patients' decision-making. Neurologists are now required to support decisions at various times during the relapsing disease course and they do so with concerns about DMTs risks. This qualitative study investigates how pwRRMS weigh up the pros and cons of DMTs, focusing on perceptions of effectiveness and risks when new treatments are considered. OBJECTIVE: To increase understanding of people's experiences of decision-making when switching DMTs. METHODS: 30 semi-structured interviews were conducted with pwRRMS in England. 16 participants had switched DMT and their experiences were compared with those who had only taken one DMT. Interviews were analysed thematically to answer: what main factors influence people's decision-making to switch DMTs and why? RESULTS: Of the 16 participants with experience of switching DMT, eight had taken two or more DMTs; eight had taken three or more. Two was the DMT median. This study demonstrated that despite the term "switching" implying that similar treatments are inter-changeable, for pwRRMS taking new treatments involves different emotions, routines, risks, prognosis and communication experiences. Two meta themes identified were: 1) A distinctive, rapid and emotional decision-making process where old emotions related to MS prognosis are revisited. 2) Switching has a different impact on communication for escalation or de-escalation processes. CONCLUSION: Switching DMT involves different routines, risks, prognosis and communication experiences. These decisions are emotionally difficult because of the fear about transitioning to secondary progressive MS, and DMT effectiveness uncertainty. Patient centred decision aids should include information about first and consecutive treatment decisions.

Understanding of and attitudes to genetic testing for inherited retinal disease: a patient perspective.

BACKGROUND/AIMS: The views of people with inherited retinal disease are important to help develop health policy and plan services. This study aimed to record levels of understanding of and attitudes to genetic testing for inherited retinal disease, and views on the availability of testing. METHODS: Telephone questionnaires comprising quantitative and qualitative items were completed with adults with inherited retinal disease. Participants were recruited via postal invitation (response rate 48%), approach at clinic or newsletters of relevant charitable organisations. RESULTS: Questionnaires were completed with 200 participants. Responses indicated that participants' perceived understanding of genetic testing for inherited retinal disease was variable. The majority (90%) considered testing to be good/very good and would be likely to undergo genetic testing (90%) if offered. Most supported the provision of diagnostic (97%) and predictive (92%) testing, but support was less strong for testing as part of reproductive planning. Most (87%) agreed with the statement that testing should be offered only after the individual has received genetic counselling from a professional. Subgroup analyses revealed differences associated with participant age, gender, education level and ethnicity (p<0.02). Participants reported a range of perceived benefits (eg, family planning, access to treatment) and risks (eg, impact upon family relationships, emotional consequences). CONCLUSIONS: Adults with inherited retinal disease strongly support the provision of publicly funded genetic testing. Support was stronger for diagnostic and predictive testing than for testing as part of reproductive planning.

Training community practitioners to work more effectively with parents to prevent childhood obesity: the impact of HENRY upon Children's Centres and their staff.

BACKGROUND: One in four children in England is overweight/obese upon starting school. HENRY (Health Exercise Nutrition for the Really Young) offers a novel, preventive approach to this problem by training practitioners to work more effectively with the parents of preschool children around obesity and lifestyle issues. The programme is being delivered to all Sure Start Children's Centres (the UK government initiative providing family support and childcare in disadvantaged areas) in Leeds, UK. METHODS: The evaluation covered the first 12 Centres to be trained (these had a reach of approximately 5000 families). A series of semi-structured interviews were conducted with Centre managers, and 'drop boxes' were provided for all staff to leave their comments. Interviews took place up to 11 months post-training, allowing a consideration of any long-term impact. RESULTS: Data from 12 interviews and 106 comment slips indicated that HENRY training was associated with considerable changes to the Centre environment. Immediate effects included changes to Centre policy and practice, including the provision of age-appropriate portion sizes and the introduction of healthy snacks; a strengthening of team working and increased staff confidence around tackling lifestyle change; and enhanced skills when working with families. Training also induced changes within the staff's personal lives (e.g. increased physical activity and family mealtimes). CONCLUSIONS: The findings suggest that positive and lasting lifestyle effects can be achieved by brief training courses involving Children's Centre staff teams. Both staff and attendant families appear to benefit. The effect on levels of preschool obesity across the city once HENRY has extended to the remaining Centres is yet to be seen.

'Like a sieve': an exploratory study on cognitive impairments in patients with multiple myeloma.

The aim of this study was to obtain a more in-depth understanding of cognitive impairments and concerns as described by patients with multiple myeloma and the strategies used to cope with them. Semi-structured qualitative interviews were undertaken with 15 multiple myeloma patients of differing age ranges and at various stages of their disease. Various cognitive impairments, such as problems with short-term memory, poor recall and lack of concentration were observed and/or expressed in at least 10 out of 15 patients, all of them long(er)-term survivors. In some patients cognitive impairments significantly interfered with their personal and professional lives, and for some patients these were described as permanent. The patients used various coping strategies, from denial, taking notes, writing diaries, reading simpler texts, using talking books and videos, to using systems for counting medication to cope with the results of their cognitive impairment. Our findings differ from much of the contemporary literature which states that if cognitive impairments in cancer patients occur, they are mostly mild and transient. More proactive supportive care is needed to help patients with multiple myeloma to cope with poorer cognitive functioning.

A systematic review of the effectiveness of Chinese herbal medication in symptom management and improvement of quality of life in adult cancer patients.

The aim of this systematic review was to assess the effectiveness of Chinese medicinal herbs used concurrently with cancer treatments in terms primarily of toxicity management but also quality of life and survival in adult cancer patients. Forty-nine trials met the inclusion criteria and were reviewed according to standard processes of systematic reviews. These trials included 3992 patients. All studies with the exception of one were of low methodological quality. The vast majority of the studies have shown that Chinese medicinal herbs improved treatment side effects, quality of life, and performance status, and some have provided evidence of tumour regression and increased survival. While no clinical recommendations can derive from such low quality studies, the number of studies reporting positive results is high enough to suggest that Chinese medicinal herbs may have a role in cancer care. However, more methodologically rigorous studies need to be developed as a priority before any firm conclusions can be drawn.