We don't have to be dowdy just because we are disabled: Summarising the problems encountered by people with limited mobility in finding and buying practical and stylish clothes.

This paper explores how people with limited mobility choose and buy clothes, and how this could be improved, both for them and for retailers. It reports on an online survey carried out May-September 2023, asking people with limited mobility about their experiences, shows the practical difficulties they encounter and makes recommendations for retailers to improve their offer and reach to this group of consumers.

Facioscapulohumeral Muscular Dystrophy European Patient Survey: Assessing Patient Reported Disease Burden and Preferences in Clinical Trial Participation.

Background: Facioscapulohumeral muscular dystrophy (FSHD) is a genetic disorder characterized by progressive muscle weakness leading to permanent disability. There are no curative treatments, however, there are several upcoming clinical trials testing new therapies in FSHD. Objective: This study aimed to explore the disease burden and patient preferences of people with FSHD to ensure that clinical trials can be designed to include outcome measures that are relevant and important to patients. Methods: A survey was developed with a steering committee clinicians and physiotherapists with relevant experience in the disease, patient representatives, a registry expert and industry consultants. Themes of the survey included; participant demographics, disease progression and impact on function, factors encouraging or discouraging clinical trial participation, and positive outcomes of a clinical trial. Results: 1147 participants responded to the online survey, representing 26 countries across Europe and a range of disease severities. The study highlighted the key symptoms causing concern for FSHD patients - muscle weakness and mobility issues - reflecting what participants want targeted for future therapies. The need for clear information and communication throughout clinical trials was emphasised. Factors most encouraging trial participation included access to new investigational therapies, access to trial results and benefits for the FSHD community. Factors most discouraging trial participation included travel related issues and fear of side effects. Conclusions: The results from this study identify the patient reported burden of FSHD and should provide researchers and industry with areas of therapeutic research that would be meaningful to patients, as well as supporting the development of patient centric outcome measures in clinical trials.

Does body mass index affect preoperative prostate specific antigen velocity or pathological outcomes after radical prostatectomy?

PURPOSE: Several studies suggest that obesity may be associated with more aggressive prostate cancer. Similarly the rate of serum prostate specific antigen change is associated with adverse tumor features and prostate cancer specific mortality rates after radical prostatectomy and radiation therapy. We examined the associations among obesity, prostate specific antigen velocity and adverse tumor features in men treated with radical prostatectomy. MATERIALS AND METHODS: A total of 587 men with documented preoperative height and weight measurements underwent radical prostatectomy. Prostate specific antigen velocity and other clinicopathological features were compared among men with a body mass index of less than 25, 25 to 29.9 and 30 or greater. RESULTS: Although Gleason score and prostate volume were similar among groups, there was a significantly lower proportion with organ confined disease and fewer low volume tumors as body mass index increased. Of patients with a body mass index of 30 or greater 52% had a preoperative prostate specific antigen velocity of more than 2 ng/ml yearly compared to 34% with a body mass index of 25 to 29.9 and 26% with a body mass index of less than 25 (p = 0.04). Although on univariate analysis body mass index was associated with adverse clinical and pathological tumor features, on multivariate analysis with other preoperative variables body mass index did not add significant independent predictive information concerning pathological stage (OR 1.02, 95% CI 0.96-1.08). CONCLUSIONS: Obesity was significantly associated with several adverse pathological features. However, it did not provide independent predictive information concerning final pathological tumor stage. Nevertheless, obesity was significantly associated with increased preoperative prostate specific antigen velocity. Additional studies are needed to further clarify the links between body mass index, prostate specific antigen velocity and prostate cancer progression, and determine whether weight reduction could lead to improved outcomes.

More favorable tumor features and progression-free survival rates in a longitudinal prostate cancer screening study: PSA era and threshold-specific effects.

OBJECTIVES: To describe the changes in pathologic outcomes and progression-free survival (PFS) rates after radical retropubic prostatectomy for clinically localized prostate cancer in men whose cancers were detected in a 12-year longitudinal prostate cancer screening study. METHODS: Between 1989 and 2001, more than 36,000 men participated in a digital rectal examination-based and prostate-specific antigen (PSA)-based screening program. In 1995, the PSA cutoff for biopsy recommendation was lowered from 4.0 ng/mL to 2.6 ng/mL, and the biopsy protocol was changed from four to at least six-sector biopsies. From the screening study, 2952 men were diagnosed with cancer and 2241 of these men underwent radical retropubic prostatectomy. We analyzed the differences in clinical and pathologic stage and PFS after surgery, according to the greater PSA cutoff era (1989 to 1995) and lower PSA cutoff era (1996 to 2001). RESULTS: A significant downward clinical and pathological stage migration was found toward T1c and organ-confined disease, respectively, in men whose cancer was detected in the lower PSA cutoff era. Furthermore, men with cancer diagnosed in the lower PSA cutoff era had improved PFS rates 5 and 8 years after radical retropubic prostatectomy (P = 0.007). These changes occurred without a significant increase in the proportion of unimportant tumors (organ confined, smaller than 0.5 cm3 without a Gleason pattern of 4 or 5). CONCLUSIONS: These findings support the enhanced detection of favorable cancer and improved PFS rates with lower PSA cutoffs and more intensive biopsy regimens, although the follow-up and lead-time and length-time biases, as well as improvements in surgical technique, might also have affected these results.

Salvage radiation therapy for prostate specific antigen progression following radical prostatectomy: 10-year outcome estimates.

PURPOSE: We evaluated men treated with salvage radiation therapy for increasing serum prostate specific antigen (PSA) following radical retropubic prostatectomy (RRP). MATERIALS AND METHODS: We retrospectively reviewed the records of 3,478 consecutive men who underwent radical retropubic prostatectomy (RRP) between 1983 and 2003, as performed by a single surgeon. A total of 307 men received salvage radiation therapy for persistently increased or increasing PSA after RRP. We compared perioperative and peri-radiotherapy clinicopathological parameters in men who achieved an undetectable PSA level after radiation therapy (responders) vs those who did not (nonresponders). We then evaluated the durability of the PSA response. RESULTS: Median time from RRP to PSA progression was 23 months (range 1 to 129). Median followup from RRP was 104 months (range 7 to 225). Median followup from salvage radiotherapy was 56 months (range 0 to 188). Of 223 men with sufficient followup information 162 (73%) subsequently had undetectable PSA (less than 0.3 ng/ml) in response to salvage radiation therapy. There was no significant difference between responders and nonresponders in the distribution of clinical and pathological tumor stages, age at RRP, surgical margin status, and the interval between RRP and salvage radiation therapy. A Gleason score of 8 to 10 was more prevalent in nonresponders than responders (28% vs 13%). Median PSA at salvage radiation therapy was 1.2 ng/ml in nonresponders vs 0.7 ng/ml in responders. Actuarial 5 and 10-year progression-free (PSA less than 0.3 ng/ml) survival probabilities in all 223 men following salvage radiation therapy were 40% (95% CI 32 to 48) and 25% (95% CI 15 to 36), respectively. Actuarial 5 and 10-year biochemical progression-free survival estimates following salvage radiation therapy in responders only were 55% (95% CI 45 to 64) and 35% (95% CI 21 to 49), respectively. Only seminal vesicle invasion was significantly associated with progression-free survival following radiation therapy on multivariate analysis. CONCLUSIONS: An undetectable PSA level following salvage radiation therapy is more frequently achieved in men with lower pre-radiation serum PSA and those without seminal vesicle or lymph node involvement. Overall approximately a fourth of men with PSA evidence of cancer progression following RRP had a durable response 10 years after the initiation of salvage radiation therapy in the protocols used in this patient cohort.