Pain Characteristics Among Individuals with Duchenne Muscular Dystrophy According to Their Clinical Stage

Background: Assessment of pain is not routine, standardized, or well-understood in individuals with Duchenne muscular dystrophy (DMD), even though pain is a common problem reported by more than half of DMD patients. Previous studies in this area included multiple neuromuscular diseases with highly variable phenotypes. Therefore, our aim was to focus on DMD specifically and evaluate comprehensive pain characteristics according to the disease stages, from ambulatory to late non-ambulatory. Methods: This was a cross-sectional study conducted in an out-patient pediatric rehabilitation clinic. Participants were 148 males with confirmed DMD, 14.5±5.3 years of age. Face-to-face interviews were conducted using a structured questionnaire regarding pain frequency, duration, intensity, location, aggravating/relieving factors, pain interference (Brief Pain Inventory), pain quality (PainDETECT Questionnaire), and functional ability (DMD Functional Ability Self-Assessment Tool). Pain characteristics were analyzed according to the clinical stage: ambulatory (Amb), early non-ambulatory (ENA), and late non-ambulatory (LNA).Results: Of the 148 participants who completed the assessment, 66 (44.6%) reported pain during the previous 4 weeks. There were no differences in the pain duration or intensity among the three groups. Pain location (Amb: calf, ENA: knee, LNA: lumbosacral region), aggravating factor (Amb: ambulation, ENA: transfer, LNA: sitting), and relieving factor (Amb: rest and massage, ENA and LNA: positional change) differed according to the clinical stage. Individuals in the LNA stage reported an increase in the frequency of pain and number of pain sites. The effect of pain on mood was also found to be greater in the LNA group than in the other clinical stages. Conclusion: Pain characteristics including location, aggravating/relieving factors, pain frequency, and pain interference change as the disease progresses in patients with DMD. Clinicians could more efficiently and critically assess and manage the patients’ pain aspect, based on these findings.

The (Un)Willingness to Keep Living at Very Advanced Ages

A long life is a general desire that will be reached by more and more people, particularly in developed countries. But the delay of mortality raises important questions about quality of life in the later years. Centenarians have received attention from different disciplines, particularly from demography and genetics, but a psychological approach on whether life at age 100 is perceived as worth living is still very limited. This study explores centenarians’ will to live and associated factors in a sample of 121 centenarians (mean age 101 years; SD 1.63 years; 84.3% female), who answered to a questionnaire comprising sociodemographic characteristics, health status, social functioning, and well-being as well as open questions on their will to live and end-of-life issues. Of the total sample, 31.4% expressed willingness to live longer, 30.6% did not, and 38% presented no clear positioning. From the qualitative thematic analysis, annoyance, uselessness, loss of meaning, disconnection, and loneliness were the most common justifications for being reluctant to live longer. Positive valuation of life and good self-rated health, followed by having a confidant and reduced pain frequency, were the reasons for being willing to live longer. From the quantitative analysis, associated factors of will to live include pain frequency, self-rated health, having a friend confidant and valuation of life. This study provides researchers suggestions for further investigation and highlight the importance of inquiring and understanding very old people’s values and views on their will to live, future wishes, and meaning in life.

Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers

Background Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as sickle cell pain crises (SCPCs). The Sickle Cell Pain Diary-Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years with SCD. This study reports on the content validity of the SCPD-C. Methods The SCPD-C was developed based on a literature review, measurement expert input, and a patient advisory board including clinicians. Three rounds of interviews (including both concept elicitation and cognitive debriefing methodologies) were conducted with caregivers of children with SCD aged < 12 to evaluate the content validity of the SCPD-C. Results Across three rounds of interviews, caregivers confirmed concepts in the SCPD-C and described observed impacts that were important and were added. Overall, caregivers evaluated the SCPD-C as easy to understand, with some minor adaptations for clarity. Additionally, the diary was split into two versions based on the child’s age and school enrollment status (SCPD-CS for school-aged and SCPD-CN for non-school age children). Conclusions Caregivers provided valuable input that led to important additions and changes to the measures. The SCPD-CS and SCPD-CN are appropriate and fit-for-purpose observer-reported outcome measures of SCPC-related pain frequency and severity, and impacts on health-related quality of life.

Involvement of mucosal flora and enterochromaffin cells of the caecum and descending colon in diarrhoea-predominant irritable bowel syndrome

Background Accumulating evidence supports the pivotal role of intestinal flora in irritable bowel syndrome (IBS). Serotonin synthesis by enterochromaffin (EC) cells is influenced by the gut microbiota and has been reported to have an interaction with IBS. The comparison between the microbiota of the caecal and colonic mucosa in IBS has rarely been studied. The aim of this study was to investigate the relationship between the gut microbiota, EC cells in caecum and descending colon, and diarrhoea-predominant IBS (IBS-D) symptoms. Results A total of 22 IBS-D patients and 22 healthy controls (HCs) were enrolled in our study. Hamilton anxiety (HAM-A) and Hamilton depression (HAM-D) grades increased significantly in IBS-D patients. In addition, the frequency of defecation in IBS-D patients was higher than that in HCs. Among the preponderant bacterial genera, the relative abundance of the Ruminococcus_torques_ group increased in IBS-D patients in caecum samples while Raoultella and Fusobacterium were less abundant. In the descending colon, the abundance of the Ruminococcus_torques_group and Dorea increased in IBS-D patients and Fusobacterium decreased. No difference was observed between the descending colon and caecum in regards to the mucosal-associated microbiota. The number of EC cells in the caecum of IBS-D patients was higher than in HCs and the expression of TPH1 was higher in IBS-D patients both in the caecum and in the descending colon both at the mRNA and protein level. Correlation analysis showed that the Ruminococcus_torques_group was positively associated with HAM-A, HAM-D, EC cell number, IBS-SSS, degree of abdominal pain, frequency of abdominal pain and frequency of defecation. The abundance of Dorea was positively associated with EC cell number, IBS-SSS, HAM-A, HAM-D and frequency of abdominal pain. Conclusions EC cell numbers increased in IBS-D patients and the expression of TPH1 was higher than in HCs. The Ruminococcus torques group and Dorea furthermore seem like promising targets for future research into the treatment of IBS-D patients.

Risk Factors and Management of Unexplained Limb Pain among Growing Children in a Tertiary Hospital

Introduction: Recurrent lower limb pain (growing pain) is the most common presenting problem of children referred to pediatric rheumatology clinics. The exact nature and aetiology still remains unclear despite the various hypotheses and theories presented in the international literature. Parents become apprehensive as physician are unsure regarding accurate diagnosis of unexplained limb pain. Objectives: To determine the risk factors of unexplained limb pain in growing children and measures taken for their management. Materials and Methods: This cross sectional study was conducted among 60 children of 3 to 12 years who presented with unexplained limb pains between July to December, 2012 in Paediatric OPD of Combined Military Hospital (CMH) Dhaka. Results: Mean age of the respondents was 7.4 years. Prevalence of growing pain was 75%, overweight 13.3% and obesity was 15.6%. The calf (37.3%) was the most common affected site for pain and in 68.3% and 31.7% cases pain occurred during night and evening respectively. Pain frequency was as follows: daily 8%; weekly 48%; monthly 31%; and every 3 months 13%. Growing Pain usually occur at slow growing period (80.4%) than rapid growing period (19.6%). The main therapeutic approach was massaging (84.4%) the painful limbs and to a lesser extent, the intake of oral anti-inflammatory agents (31.1%). All patients had laboratory tests within normal values. Conclusions: Growing pain (GP) is a frequent non-inflammatory syndrome that is relatively common in children and usually benign. It commonly affects the lower extremities of children. Precise history taking and physical examination makes clinical diagnosis easier. Patients’ and family eassurance is of utmost importance in management of GP. JAFMC Bangladesh. Vol 16, No 2 (December) 2020: 59-62

Prevalence of High BMI Status in Adults with Sickle Cell Disease

Introduction Emerging literature suggests body mass index (BMI) may be increasing in individuals with sickle cell disease (SCD), a condition historically associated with underweight status. However, the current prevalence of overweight and obese adults with SCD remains unclear in a country where high BMI is prevalent in the general population. We present an epidemiological analysis of the prevalence of overweight and obese individuals in a large representative sample of adult SCD patients, identifying associations between BMI, sociodemographic and clinical characteristics. Methods Using the Sickle Cell Disease Consortium (SCDIC) registry, we compiled a detailed clinical and demographical from a non-random sample of adults, aged 20-45 years. The SCDIC collects data from eight academic centers providing comprehensive care throughout the U.S. Adult participants were excluded from the analysis if they were under 20 years of age, pregnant at the time of enrollment, or were without medical records or patient enrollment surveys. Sociodemographic information and patient-reported outcomes, including pain frequency and severity, SCD complications, and hydroxyurea use, were collected at the time of enrollment. Non-SCD medical conditions and anthropometric measurements were abstracted from medical records. We stratified BMI, measured in kilograms per meters squared (kg/m2) following CDC criteria: underweight (&lt;18.5 kg/m2), normal weight (18.5-24.9 kg/m2), overweight (25.0-29.9 kg/m2), and obese (&gt;30 kg/m2). An epidemiological analysis was performed of BMI in those with SCD. Bivariate analyses were conducted using Chi-square test, t-test, and ANOVA; non-parametric tests were used when appropriate. Data were analyzed using SAS 9.4 (SAS Institute; Cary, NC). Results In total, 1,664 adults met the inclusion criteria for this cross-sectional analysis of SCDIC registry data. The median BMI for the entire sample was 23.9 kg/m² (IQR: 21.1-28). The majority of participants were African American (99.1%), female (56.6%), and had an HbSS genotype (69.6%). The prevalence of an obese BMI (17.5%) was greater than underweight BMI (6.4%) among the entire cohort (Table 1). When compared to under/normal weight participants, those who were overweight/obese were older (median age 31.2 versus 29.3 years; p&lt;0.0001) and had a higher prevalence of hypertension (45.1% versus 28.3%; p&lt;0.0001). Most participants in the overweight/obese BMI categories had genotype HbSS (59.0%), however, genotype HbSS accounted for 77% of the under/normal weight category. Most participants with an overweight/obese BMI also had some college or vocational training (39.9%) and had Medicare, Medicaid, or military insurance (71.9%). Median BMI did not differ on reported use or non-use of hydroxyurea (23.9 [IQR: 21.1-27.6] vs 23.9 [IQR: 21.0-28.4] p=0.1), mean number of patient-reported SCD complications (2.6 versus 2.6; p=0.6), nor mean pain frequency (49.6 versus 50.6; p=0.06). However, overweight/obese participants reported significantly higher mean pain intensity than their under/normal weight counterparts (51.8 versus 50.8; p=0.03). Conclusion To date, this is the largest analysis of adult BMI among individuals with SCD in the U.S. Among the eight SCDIC sites spanning from the Northeast to Southwest U.S., the prevalence of underweight BMI was less than that of overweight or obese BMI status, challenging previous understandings of weight status and further aligning with the growing rates of overweight and obesity in the general U.S. population. Significant associations between high BMI and hypertension, age, and pain intensity highlight an opportunity for further research to understand the impact of increasing BMI on SCD outcomes and non-SCD comorbidities. Figure 1 Figure 1. Disclosures Ibemere: bluebird bio Insights Council: Consultancy, Honoraria; Ugali Youth: Consultancy, Membership on an entity's Board of Directors or advisory committees. King: Health Resources and Services Administration: Research Funding; National Cancer Institute: Research Funding; Global Blood Therapeutics: Research Funding; National Heart, Lung, and Blood Institute: Research Funding. Hankins: Global Blood Therapeutics: Consultancy; UpToDate: Consultancy; Bluebird Bio: Consultancy; Vindico Medical Education: Consultancy. Tanabe: CSL Behring: Consultancy. Shah: Emmaus: Consultancy; GLG: Consultancy; Alexion: Speakers Bureau; Guidepoint Global: Consultancy; Bluebird Bio: Consultancy; CSL Behring: Consultancy; Novartis: Research Funding, Speakers Bureau; GBT: Consultancy, Research Funding, Speakers Bureau.

Mapeamento dinâmico da dor aos três, seis e nove meses após a cirurgia do câncer de mama / Dynamic pain mapping at three, six and nine months after breast cancer surgery

Purpose: To map pain frequency and pain intensity according to activities in the physical domain of the Disabilities of the Arm, Shoulder and Hand Questionnaire (DASH), at three, six and nine months after breast cancer surgery. In addition, to verify the correlation between upper limb function and pain intensity. Methods: This is a prospective cohort study, with follow-up at three time points. 22 Brazilian women diagnosed with breast cancer were included at three months after breast surgery. They performed the DASH questionnaire, the Body Pain Diagram and the Visual Analogue Scale. Frequency measures were used to analyze the frequency and intensity of pain in the items of the physical domain of the DASH. Pearson's correlation coefficient between pain intensity and the DASH total score at the three different times was calculated, a 95% confidence interval was set. Results: For twenty-two women at three, six and nine months after surgery, the body area with the highest pain frequency was the upper limb (UL) homolateral to the surgery, although, the contralateral UL was also cited as one of the areas with the highest pain frequency at sixth and ninth month. Pain intensity at three and six months remained mild and moderate in ninth month. The DASH activities with the highest pain frequency were: “putting something on a shelf above your head”, “doing heavy household chores” and “carrying a heavy object”. The correlation between pain intensity and function of the UL contralateral to surgery at nine months was strong (r=0,718; p0.01). Conclusion: The body area with the highest pain frequency at all three times points of analysis was the UL homolateral to the surgery, although the contralateral UL was also present in sixth and ninth month. There was an increase in pain intensity over time. The most painful activities were those that required large amplitudes in different planes of motion. At the ninth month, pain in the contralateral UL showed a strong correlation with limb dysfunction.

The Geography of Chronic Pain in the United States and Canada.

Our understanding of population pain epidemiology is largely based on national-level analyses. This focus, however, neglects potential cross-national, and especially sub-national, geographic variations in pain, even though geographic comparisons could shed new light on factors that drive or protect against pain. This article presents the first comparative analysis of pain in the U.S. and Canada, comparing the countries in aggregate and analyzing variation across states and provinces. Analyses are based on cross-sectional data collected in 2020 from 2,124 U.S. and 2,110 Canadian adults 18 years and older. Our pain measure is a product of pain frequency and pain-related interference with daily activities. We use regression and decomposition methods to link socioeconomic characteristics and pain, and inverse-distance weighting spatial interpolation to map pain scores. We find significantly and substantially higher pain in the U.S. than in Canada. The difference is accounted for by Americans' lower economic wellbeing. Additionally, we find variation in pain within countries; the variation is statistically significant across U.S. states. Further, we identify nine hotspot states in the Deep South, Appalachia, and the West where respondents have significantly higher pain than those in the rest of the U.S. or Canada. This excess pain is partly attributable to economic distress, but a large part remains unexplained; we speculate that it may reflect the sociopolitical context of the hotspot states. Overall, our findings identify areas with high need for pain prevention and management; they also other scholars to consider geographic factors as important contributors to population pain.

To Live or Die: What to Wish at 100 Years and Older

Previous research has shown that will to live is a strong predictor for survival among older people, irrespective of age, gender, and comorbidities. However, research on whether life at age 100 is perceived as worth living is limited. The available literature has presented evidence for good levels of positive attitudes and life satisfaction at such an advanced age, but it has also suggested that a longing for death is common. This study aimed to add to the existing data on this matter by exploring centenarians' will to live and the associated factors. The sample comprised 121 centenarians (mean age, 101 years; SD, 1.63 years), 19 (15.7%) of whom were males, from two centenarian studies (PT100). Answers to open questions were analyzed to identify the centenarians' will to live and the reasons behind it. Three groups were created (willing to live longer, not willing to live longer, no clear positioning) and further analyzed in terms of sociodemographic characteristics, health status, social functioning, and well-being. Of the total sample, 31.4% expressed willingness to live longer, 30.6% did not, and 38% presented no clear positioning. The presence of the Catholic religion (God) was referred for centenarians in all three groups. Annoyance, uselessness, loss of meaning, disconnection, and loneliness were the most common justifications for being reluctant to live longer. Positive valuation of life and good self-rated health, followed by having a confidant and reduced pain frequency, were the factors associated with being willing to live longer. The results of the study contribute to the understanding of the psychological functioning of individuals with exceptional longevity, particularly concerning the factors behind willingness to live at such an advanced age.

Prevalence of musculoskeletal injury and pain of UK-based podiatrists and the impact of enforced altered working practices

Background Occupational musculoskeletal injuries are prevalent in healthcare workers and are reported to be profession-specific. There is, however, a paucity of information around the injuries sustained from working as a podiatrist. This paper looks at the incidence of injury from working as a podiatrist, the aggravating factors to sustain these injuries and whether the changes in workload due to the COVID-19 pandemic altered the incidence. Methods A modified work based musculoskeletal injury questionnaire was distributed in the UK via podiatry led social media platforms. Open and Closed questions explored the demographics of the sample, perceived injury 12 months prior to the COVID-19 pandemic and then 6 months into the lockdown. Pre and post COVID-19 data were analysed for differences and thematic analysis was included to categorise reported experiences. Results 148 podiatrists representing 3 % of HCPC registered practitioners responded to the questionnaire. Employment status altered as a result of the COVID-19 pandemic with a 13 % reduction in those working full time. Environments also changed with domiciliary and telehealth significantly increasing (p > 0.00) and non-clinical roles being extended (p > 0.002). Pain frequency and intensity significantly (p > 0.04) increased as a result of the pandemic with shoulder pain being most frequent before lockdown altering to the neck during the lockdown. Two main themes were identified that were attributed to the causes of pain including physical demands and working in awkward spaces. Conclusions Work-related musculoskeletal pain in podiatrists is common with the shoulder and neck being the most frequently affected. Changes in work practices due to the restrictions enforced from the COVID-19 pandemic increased the frequency and intensity of pain mostly associated with increased domiciliary and telehealth working environments.