Considering the value of online support groups for colorectal conditions: perspectives from caregivers and adult patients.

PURPOSE: To evaluate the benefits of participating in an online support group for caregivers of children with a colorectal condition or adult patients with a similar condition. METHODS: An electronic survey was administered to members of an international online support group (18 items for caregivers; 15 for patients). Items included demographics, medical diagnosis, potential benefits, and overall experiences in the group. Quantitative results were summarized as descriptive trends, while qualitative responses were summarized thematically. RESULTS: Respondents (102 caregivers, 6 patients) were primarily female, 35-44 years old, Caucasian, and resided in the United States. Most respondents learned about the support group from medical providers or online search. Cited benefits included learning information, gaining support, forming connections through shared experience, and utilizing a unique resource. Being a member of the group was helpful to respondents, improved their mental health and access to health information, and they would recommend the group to others. CONCLUSION: Participation in online support groups offers educational and emotional benefits to patients/caregivers which complements the medical support from their colorectal teams. Thus, colorectal providers need to be aware of the availability and potential benefits of these groups, and encourage their patients/caregivers to be actively involved.

Sexual well-being in adolescent and young adults born with arm: the perspective of the patients.

PURPOSE: Sexual well-being and sexual functioning are understudied in patients born with ARM. The aim of this exploratory study was to investigate sexual history, main fears, and problems encountered during sexual relationships. METHODS: Before participating in a sexual education intervention, 21 adolescents or young adults (12 males; mean 28.8; SD 10.6) born with ARM, answered a ten-item questionnaire specifically developed to evaluate sexual well-being. Percentages and Chi-square were calculated. RESULTS: 52.4% were married/had a partner. The majority (71%) declared that had sexual relationships. Mean age of the first sexual relationship was 18.8 (2.7) and 22.7 (3.8) for males and females, respectively. Females reported both more fear and experience of pain during sexual intercourse, compared to males. Main experienced problems and fears for male patients were loss of feces and premature ejaculation, followed by the fear of lack of erection and managing contraception. Main experienced problems and fears in females were loss of feces, pain, lack of desire, and lack of lubrication. In only few cases, patients asked for advices to a pediatric surgeon or to an adult surgeon specialized in ARM. CONCLUSIONS: Adult and adolescent patients may benefit of andrological/gynecological evaluation, psychological support, and sexual counseling to improve their sexual well-being.

A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences.

PURPOSE: Despite medical advances, individuals with anorectal malformations (ARM) experience significant medical and psychosocial challenges due to their complex conditions. This study aimed to obtain the perspectives of adults with ARM throughout their lifetime regarding their medical, school/vocational, and psychosocial functioning. METHODS: A 40-item survey was administered electronically to members of an international ARM Facebook group (56% response rate; n = 125). Survey items included demographics, medical diagnosis/treatment, school/workplace accommodations, mental health diagnosis/treatment, and life perspectives. RESULTS: Majority of respondents were female (73%), aged 25-34 years (31%), Caucasian (92%), US residents (60%), and attended public school (86%). 53% of respondents are currently employed. 32% of respondents received school-based accommodations and 24% at work. 58% of respondents had a mental health diagnosis, with depression (82%) and anxiety (81%) being the most common. CONCLUSIONS: Results suggest that adults with ARM experience ongoing difficulties related to schooling, employment, and mental health, in addition to medical complications. It is becoming increasingly clear that improving patients' physical well-being is not enough; psychosocial concerns must also be addressed directly. Thus, it is important for clinicians to be aware of and partner with psychosocial providers to support these challenges associated with ARM, to maximize patients' overall health and well-being.

Magnetic resonance imaging evaluation after anorectal pull-through surgery for anorectal malformations: a comprehensive review.

Anorectal malformations (ARM) include congenital anomalies of the distal anus and rectum with or without anomalies of the urogenital tract. Posterior sagittal anorectoplasty (PSARP) and minimally invasive laparoscopically assisted anorectal pull-through (LAARP) procedure are now mainly used to surgically treat ARMs. Magnetic resonance imaging (MRI) is the modality of choice for interval follow-up assessment of structural and functional outcome after these surgeries to assess future bowel continence. Well-developed pelvic musculature has been found to be a reflector of better anal continence after ARM surgery. Thus, MRI plays an important role in evaluating the external sphincter complex, puborectalis, and levator ani muscles. Other parameters that need to be noted include the position of the neoanus, rectal diameter, anorectal angle, presence or absence of megarectum, and other ancillary anomalies in the spine. Thus, MRI due to superior soft-tissue resolution is the modality of choice and indispensable for post-operative pelvic evaluation in children.

The role of coping strategies on health-related quality of life in adults with anorectal malformations.

PURPOSE: Coping strategies have been acknowledged as crucial for the well-being and for health-related quality of life (HRQoL). The main aim of the present study is to determine whether different types of coping strategies predict HRQoL in patients born with ARM, above and beyond the variance explained by fecal and urinary continence. METHODS: 71 adult patients from the Italian Parents' and Patients' Organization for Anorectal Malformations (AIMAR) participated in the study. Participants completed measures of fecal and urinary continence of the Hirschsprung Disease/Anorectal Malformation Quality of Life (HAQL) (Hanneman et al. in Dis Col Rect 44:1650-1660, 2001), the Short Form Health Survey (SF-36) (Apolone and Mosconi in J Clin Epidemiol 51:1025-1036, 1998), and the Brief Coping Orientation to Problems Experienced (COPE) Inventory (Carver in Int J Behav Med 4:92-100, 1997), which measures different coping strategies: maladaptive, problem-focused and emotion-focused. RESULTS: Hierarchical regression analyses showed that fecal continence (ß = 0.53, p < 0.01) and urinary continence significantly predict (ß = 0.23, p < 0.05) Physical HRQoL. Fecal continence (ß = 0.36, p < 0.01) and maladaptive coping strategies significantly predict (ß = -0.27, p < 0.05) Mental HRQoL. CONCLUSION: Besides considering the importance of fecal and urinary continence for Physical HRQoL, these findings indicate that maladaptive coping strategies are associated with worse Mental HRQoL. Interventions aimed at enhancing the patients' HRQoL should target coping strategies by reducing denial, behavioral disengagement, substance abuse, and self-blame.

Lower urinary tract symptoms in children with anorectal malformations with rectoperineal fistulas.

AIM: The aim was to describe the frequency of lower urinary tract symptoms (LUTS) in children with anorectal malformations with rectoperineal fistulas (ARM-P), as compared with healthy controls based on gender. METHOD: LUTS were defined using the 2014 definitions of the International Children's Continence Society. Data were collected at 2 tertiary pediatric surgery centers in 2 countries from all children aged 4-12years who had undergone an operation for ARM-P. RESULTS: A total of 24 girls and 33 boys, with a median age of 8 (4-12)years, were eligible and compared with 165 controls. Of the patient group, 4 (17%) girls had 8 urinary tract anomalies (UTA), and 8 (24%) boys had 13 UTA. There were no gender differences in LUTS among the patients. The frequency of urinary tract infections was higher among the patients (5/24 girls and 7/55 boys) than the controls (1/55 and 4/110) (p=0.009). More patients (5/24 girls and 5/33 boys) than controls (1/55 and 2/110) used daily urinary medications (p=0.009 and p=0.007, respectively). Patients with UTA reported urinary infections more frequently (3/4 girls and 4/8 boys) than those without UTA (2/20 girls and 0/25 boys) (p=0.018 and p=0.002, respectively). CONCLUSION: Children with ARM-P had more LUTS than controls, and patients with concomitant UTA had more LUTS than patients without UTA. Therefore, children with ARM-P are suggested to have routine follow-up for both UTA and LUTS.