Longitudinal evaluation of quality of life in 288 patients with Neurofibromatosis 2

Advances in molecular biology have resulted in novel therapy for neurofibromatosis 2-related (NF2) tumours, highlighting the need for robust outcome measures. The disease-focused NF2 impact on quality of life (NFTI-QOL) patient questionnaire was assessed as an outcome measure for treatment in a multi-centre study. NFTI-QOL was related to clinician-rated severity (ClinSev) and genetic severity (GenSev) over repeated visits. Data were evaluated for 288 NF2 patients (n = 464 visits) attending the English national NF2 clinics from 2010 to 2012. The male-to-female ratio was equal and the mean age was 42.2 (SD 17.8) years. The analysis included NFTI-QOL eight-item score, ClinSev graded as mild, moderate, or severe, and GenSev as a rank order of the number of NF2 mutations (graded as mild, moderate, severe). The mean (SD) 8.7 (5.4) score for NFTI-QOL for either a first visit or all visits 9.2 (5.4) was similar to the published norm of 9.4 (5.5), with no significant relationships with age or gender. NFTI-QOL internal reliability was good, with a Cronbach’s alpha score of 0.85 and test re-test reliability r = 0.84. NFTI related to ClinSev (r = 0.41, p < 0.001; r = 0.46 for all visits), but weakly to GenSev (r = 0.16, p < 0.05; r = 0.15 for all visits). ClinSev related to GenSev (r = 0.41, p < 0.001; r = 0.42 for all visits). NFTI-QOL showed a good reliability and ability to detect significant longitudinal changes in the QOL of individuals. The moderate relationships of NFTI-QOL with clinician- and genetic-rated severity suggest that NFTI-QOL taps into NF2 patient experiences that are not encompassed by ClinSev rating or genotype.

“Considering there’s supposedly nothing wrong with me, it’s not a life”: Women’s Narratives of Distress, Visiting Herbalists, and Being Well in the 21st Century

Distress can have a profoundly negative impact on the well-being of women (who are the main receivers of treatment for distress). Distress also poses a huge financial problem for the United Kingdom, the cost of which is predicted to reach over £26bn by 2026. A growing body of research has shown that various medicinal plants have potential to treat different aspects of distress. However, there is little research investigating the patient experience of western herbal practice (WHP), and none investigating women’s experiences of WHP for distress. In response, this longitudinal study utilised interviews with twenty-six women who were visiting herbalists for distress across the south-east of The United Kingdom to elicit their stories of distress, as well as their experiences of WHP. The narratives were analysed from a constructionist standpoint, using inductive thematic analysis. The participants’ narratives highlighted the profound impact of everyday distress, whilst feelings associated with distress (anxiety, low mood, isolation, shame and guilt) were frequently communicated via the use of metaphors. These negative feelings, often combined with unsuccessful biomedical encounters, frequently led to the women feeling desperate when first visiting a herbalist. The participants’ experiences of WHP showed that an accessible practitioner and good therapeutic relationship combined with flexible herbal treatment, allowed women with diverse stories of distress to overcome feelings of desperation. Ongoing support allowed the women to feel like they had a safety net as they journeyed from a place of distress, back into the wider world. These findings were supported by more unusual negative accounts, which showed how the herbal therapeutic process could be unsuccessful if elements were missing. This research is of significance as it helps to deepen our understanding of women’s experiences of distress – particularly perceptions of stigma which surround feelings of shame (linked to an inability to cope) and guilt (linked to the perceived impact of distress on others). The research also has relevance for WHP, as it highlights which positive aspects of WHP are of particular importance to women patients who are living with distress.