Performance of the SarQoL quality of life tool in a UK population of older people with probable sarcopenia and implications for use in clinical trials: findings from the SarcNet registry.

BACKGROUND: The Sarcopenia Quality of Life (SarQoL) questionnaire is a disease-specific sarcopenia quality of life tool. We aimed to independently assess SarQoL with a particular focus on its suitability as a clinical trial outcome measure. METHODS: We analysed data from the UK Sarcopenia Network and Registry. Measures of physical performance and lean mass were collected at baseline. SarQoL and the Strength, Assistance, Rise, Climb - Falls (SARC-F) questionnaire (to assess functional ability) were collected at both baseline and six-month follow-up. Global changes in fitness and quality of life at 6 months were elicited on seven-point Likert scales. Internal consistency was assessed using Cronbach's alpha. Responsiveness (Cohen's d and Guyatt coefficients) and minimum clinically important differences were calculated for participants reporting slight improvement or worsening in their global scores. Concurrent validity was assessed by correlating baseline SarQoL scores with measures of physical performance and functional ability. RESULTS: We analysed data from 147 participants, 125 of whom underwent follow up assessment; mean age 78 years; 72 (49%) were women. Internal consistency was good; Cronbach's alpha was 0.944 at baseline and 0.732 at telephone follow-up. Correlation between baseline and follow-up SarQoL was weak (r = 0.27; p = 0.03). The minimum clinically important improvement ranged from 5 to 21 points giving trial sample size estimates of 25-100 participants. SarQoL scores were moderately correlated with handgrip (r = 0.37; p < 0.001), SARC-F (r = - 0.45; p < 0.001), short physical performance battery (r = 0.48; p < 0.001) and 4-m walk speed (r = 0.48; p < 0.001). CONCLUSIONS: SarQoL has acceptable performance in older UK participants with probable sarcopenia and is sufficiently responsive for use in clinical trials for sarcopenia.

Developing a UK sarcopenia registry: recruitment and baseline characteristics of the SarcNet pilot.

BACKGROUND: sarcopenia registries are a potential method to meet the challenge of recruitment to sarcopenia trials. We tested the feasibility of setting up a UK sarcopenia registry, the feasibility of recruitment methods and sought to characterise the pilot registry population. METHODS: six diverse UK sites took part, with potential participants aged 65 and over approached via mailshots from local primary care practices. Telephone pre-screening using the SARC-F score was followed by in-person screening and baseline visit. Co-morbidities, medications, grip strength, Short Physical Performance Battery, bioimpedance analysis, Geriatric Depression Score, Montreal Cognitive Assessment, Sarcopenia Quality of Life score were performed and permission sought for future recontact. Descriptive statistics for recruitment rates and baseline measures were generated; an embedded randomised trial examined the effect of a University logo on the primary care mailshot on recruitment rates. RESULTS: sixteen practices contributed a total of 3,508 letters. In total, 428 replies were received (12% response rate); 380 underwent telephone pre-screening of whom 215 (57%) were eligible to attend a screening visit; 150 participants were recruited (40% of those pre-screened) with 147 contributing baseline data. No significant difference was seen in response rates between mailshots with and without the logo (between-group difference 1.1% [95% confidence interval -1.0% to 3.4%], P = 0.31). The mean age of enrollees was 78 years; 72 (49%) were women. In total, 138/147 (94%) had probable sarcopenia on European Working Group on Sarcopenia 2019 criteria and 145/147 (98%) agreed to be recontacted about future studies. CONCLUSION: recruitment to a multisite UK sarcopenia registry is feasible, with high levels of consent for recontact.

Exploring the experience of fatigue in people with Charcot-Marie-Tooth disease.

This qualitative study explored the phenomenon of fatigue for people with Charcot-Marie-Tooth disease, while acknowledging the triggers, impact and strategies people have developed to manage this symptom in daily life. A phenomenological approach was used to explore the experience of fatigue. Participants were recruited from a support group. Twenty-five people participated in three focus groups. Group interviews were tape recorded and independently transcribed. Transcripts were coded and emerging themes were highlighted. Four areas were explored and themes identified within them. Fatigue descriptions: energy depletion, overwhelming nature, variations in fatigue and fatigue as an abnormal experience; triggers of fatigue: activity, stress and mental concentration; impact of fatigue on: physical abilities, mood, guilt and frustration, isolation and concerns about how they were perceived by others; strategies to manage fatigue: coping with symptoms; planning ahead; deception; and reducing symptoms. This study revealed that fatigue is an overwhelming experience for people with Charcot-Marie-Tooth disease that impacts on many areas of their lives. People may require significant adjustment that could be facilitated by fatigue management approaches. In addition, exercise may have potential to reduce the symptoms of fatigue in some people.