With a myriad of new technologies in haemophilia care, acute bleeding episodes are less frequent, and now chronic pain is often the most prevalent and challenging co-morbidity of haemophilia. Fifty percent of people with haemophilia (PWH) report experiencing chronic musculoskeletal pain, and between 35% and 50% report that current treatments they have tried for chronic pain are not effective, with significant debilitating personal and healthcare resource impacts. 1 As a result, developing effective treatments for chronic pain in people with haemophilia has been clearly identified as a priority for research in bleeding disorders. 2 Pain experienced by PWH is usually attributed to bleeding, arthropathy, and synovitis. Recommendations on pain management are predominantly focused on pharmacological interventions and orthopaedic surgery. 3 Management will typically consist of coagulation factor replacement, analgesia, anti-inflammatory medication, and physiotherapy in the first instance, moving on to injections and surgical options. However, there is increasing evidence highlighting the need for interventions that consider the physical, social, psychological, and functional ramifications of a life lived with pain. 1 Recently published National Institute for Health and Care Excellence (NICE) guidance in the United Kingdom (2021) recommends a shift in how chronic pain is assessed and managed, and highlights that the experience of pain is influenced by social factors (including deprivation, isolation, lack of access to services), emotional factors (including anxiety, distress, previous trauma), expectations and beliefs, mental health (including depression and post-traumatic stress disorder) and biological factors. 4 This letter considers how these potential contributors may influence the pain experience for PWH.Current prophylaxis for the treatment of haemophilia was not read-
Introduction Haemophilia research has traditionally focused on patients diagnosed with haemophilia and although research priorities are rapidly changing, there is still a lot more we need to understand about the experiences and psychosocial issues facing women who are diagnosed as carriers of haemophilia (Haemophilia, https://doi.org/10.1111/hae.14043). One study noted that the understanding of carriers’ experience of bleeding by healthcare professionals is limited and that many women have had negative experiences of healthcare (Haemophilia, 17, 2011, 237). The carrier population does not typically receive much support for themselves as individuals as they are often not registered at Haemophilia Centres in their own right. Aim This study aimed to look at the emotional wellbeing of carriers in more detail. Method This was initially investigated through the use of focus groups and individual interviews with 16 participants (Stage 1) and then widening the study using an online questionnaire battery developed from the themes identified from these interviews (Stage 2). The questionnaire battery was completed by 226 participants. Results Descriptive statistics are reported on the endorsement of themes identified in Stage 1 and around participants’ experiences of their carriership and healthcare. Results demonstrated that the participants have had a number of difficulties with accessing helpful information and support during key times in their lives, for example, at diagnosis and when deciding whether to start a family. They also showed that although participants endorsing a higher number of bleeding symptoms scored statistically significantly higher in measures of depression, anxiety and negative affect, this difference was not clinically significant. Conclusion These results lend support to the growing evidence base that women who are carriers of haemophilia have a distinct set of (currently unmet) needs that need assessing and treating.
Objective The purpose of this study was to examine the feasibility and acceptability of a wearable device and telehealth counseling physical activity intervention early after lumbar spine surgery. Methods Sixteen patients were randomized to an 8-session physical activity intervention or to usual postoperative care after surgery. The intervention included a wearable device (ie, Fitbit) and telehealth counseling by a licensed physical therapist. Feasibility of study procedures was assessed through recruitment, randomization, retention, and participation rates. Acceptability was assessed through a satisfaction survey and median within-participant change in objective physical activity (steps per day and time spent in moderate-to-vigorous physical activity) and patient-reported outcomes. Results Of 64 participants who were eligible, recruitment and randomization rates were 41% and 62%, respectively. Retention for objective physical activity and patient-reported outcomes was 94% and 100%, respectively, at 6-month follow-up. Seven (88%) participants in the intervention group completed all telehealth sessions and 6 (75%) met step goals over the 8 sessions. All participants in the intervention group found the wearable device and telehealth counseling to be helpful and reported it much or somewhat more important than other postoperative services. Median within-participant change for steps per day improved from baseline (preoperative) to 6 months after surgery for both the intervention (1070) and usual care (679) groups, while moderate-to-vigorous physical activity only improved for the intervention group (2.2. minutes per day). Improvements in back and leg pain and disability were noted for both groups. No adverse events were reported in the study. Conclusions Combining wearable technology and telehealth counseling is a feasible approach to promote physical activity during the early postoperative period after spine surgery. Future randomized controlled trials are needed to investigate the efficacy of leveraging wearables and telehealth during postoperative rehabilitation. Impact This study has implications for clinical dissemination of physical activity strategies into the rehabilitation setting. Trial registration https://clinicaltrials.gov/ct2/show/NCT04591249
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.