Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity - a scoping review.

BACKGROUND: Parenting children with special health care needs can be challenging particularly if children have complex conditions. Parents may struggle to manage their child's health and their own emotions, contributing to poorer health outcomes for the family. Frequent healthcare contact presents opportunities to intervene, but current evidence review is limited. This review scopes and synthesizes interventions to improve health, wellbeing and parenting skills. METHODS: Using formal scoping review methodology MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, ERIC, ASSIA, HMIC and OpenGrey were searched to February 2017. Citations were double screened according to predetermined eligibility criteria. Data were extracted and synthesized on study design, population, measurement tools, and results. RESULTS: Sixty-five studies from 10,154 citations were included spanning parenting programs, other parent behavior change interventions, peer support, support for hospital admission and discharge and others. Interventions for parents of children with a wide range of conditions were included. These targeted a broad selection of parent outcomes, delivered by a wide variety of professionals and lay workers. Most studies reported positive outcomes. No serious adverse events were noted but issues identified included group and peer relationship dynamics, timing of interventions in relation to the child's disease trajectory, the possibility of expectations not fulfilled, and parent's support needs following intervention. Children with medical complexity were not identified explicitly in any studies. CONCLUSIONS: The range of interventions identified in this review confirms that parents have significant and diverse support needs, and are likely to benefit from a number of interventions targeting specific issues and outcomes across their child's condition trajectory. There is much scope for these to be provided within existing multi-disciplinary teams during routine health care contacts. Careful tailoring is needed to ensure interventions are both feasible for delivery within routine care settings and relevant and accessible for parents of children across the complexity spectrum. Further review of the existing literature is needed to quantify the benefits for parents and assess the quality of the evidence. Further development of interventions to address issues that are relevant and meaningful to parents is needed to maximize intervention effectiveness in this context.

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review.

BACKGROUND: Primary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients' to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. METHODS: A systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. RESULTS: Thirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. CONCLUSION: A wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.

A survey of facilitators and barriers to recruitment to the MAGNETIC trial.

BACKGROUND: Recruitment to randomised controlled trials with children is challenging. It is imperative to understand the factors that boost or hinder recruitment of children to clinical trials. We conducted a survey of facilitators and barriers to recruitment to the MAGNETIC trial, using a previously developed web-based tool. METHODS: MAGNETIC is a multicentre randomised trial of nebulised magnesium in acute severe asthma, recruiting 508 children from 30 UK sites. Recruiters were asked to grade a list of factors from -3 to +3 depending on whether the factor was perceived as a strong, intermediate or weak barrier (-3 to -1) or facilitator (+1 to + 3), and using (0) if it was thought to be not applicable. Free text responses were invited on strategies applied to counter the identified barriers. RESULTS: The commonly identified facilitators were motivation and experience of study teams, effective communication and coordination between teams at site and between sites and the Clinical Trials Unit, the presence of designated research nurses, good trial management, clinical trial publicity, simple inclusion criteria, effective communication with parents and presentation of trial information in a simple and clear manner. The commonly identified barriers were heavy clinical workload, shift patterns of work, Good Clinical Practice (GCP) training, inadequate number of trained staff, time and setting of consent seeking, non-availability of research staff out of hours and parents' concerns about their child taking an experimental medicine. Having a designated research nurse, arranging GCP training and trial-related training sessions for staff were the most commonly reported interventions. CONCLUSIONS: This study highlights important generic and trial-specific facilitators and barriers to recruitment to a paediatric trial in the acute setting and provides information on the recruitment strategies or interventions that were applied to overcome these barriers. This information can be very useful in informing the design and conduct of future clinical trials with children, particularly in the acute or emergency setting. TRIAL REGISTRATION: ISRCTN, ISRCTN81456894 . Registered on 15 November 2007.

Determinants of Treatment Abandonment in Childhood Cancer: Results from a Global Survey.

BACKGROUND: Understanding and addressing treatment abandonment (TxA) is crucial for bridging the pediatric cancer survival gap between high-income (HIC) and low-and middle-income countries (LMC). In childhood cancer, TxA is defined as failure to start or complete curative cancer therapy and known to be a complex phenomenon. With rising interest on causes and consequences of TxA in LMC, this study aimed to establish the lay-of-the-land regarding determinants of TxA globally, perform and promote comparative research, and raise awareness on this subject. METHODS: Physicians (medical oncologists, surgeons, and radiation therapists), nurses, social workers, and psychologists involved in care of children with cancer were approached through an online survey February-May 2012. Queries addressed social, economic, and treatment-related determinants of TxA. Free-text comments were collected. Descriptive and qualitative analyses were performed. Appraisal of overall frequency, burden, and predictors of TxA has been reported separately. RESULTS: 581 responses from 101 countries were obtained (contact rate = 26%, cooperation rate = 70%). Most respondents were physicians (86%), practicing pediatric hematology/oncology (86%) for >10 years (54%). Providers from LMC considered social/economic factors (families' low socioeconomic status, low education, and long travel time), as most influential in increasing risk of TxA. Treatment-related considerations such as preference for complementary and alternative medicine and concerns about treatment adverse effects and toxicity, were perceived to play an important role in both LMC and HIC. Perceived prognosis seemed to mediate the role of other determinants such as diagnosis and treatment phase on TxA risk. For example, high-risk of TxA was most frequently reported when prognosis clearly worsened (i.e. lack of response to therapy, relapse), or conversely when the patient appeared improved (i.e. induction completed, mass removed), as well as before aggressive/mutilating surgery. Provider responses allowed development of an expanded conceptual model of determinants of TxA; one which illustrates established and emerging individual, family, center, and context specific factors to be considered in order to tackle this problem. Emerging factors included vulnerability, family dynamics, perceptions, center capacity, public awareness, and governmental healthcare financing, among others. CONCLUSION: TxA is a complex and multifactorial phenomenon. With increased recognition of the role of TxA on global pediatric cancer outcomes, factors beyond social/economic status and beliefs have emerged. Our results provide insights regarding the role of established determinants of TxA in different geographical and economic contexts, allow probing of key determinants by deliberating their mechanisms, and allow building an expanded conceptual model of established and emerging determinants TxA.

The Effect of Job Demand-Control-Social Support Model on Nurses' Job Satisfaction in Specialized Teaching Hospitals, Ethiopia.

BACKGROUND: The job demand-control-social support model has been widely studied in western countries but has not been theoretically addressed on health workers of sub-Saharan African countries. Therefore, this study investigates the relationship between Job Demand-Control-Support Model and job satisfaction in specialized teaching hospitals in Ethiopia. METHOD: A cross-sectional survey was conducted from September 2014 to May 2015 in three public specialized teaching hospitals in Ethiopia. Among 1371 nurses, 360 were selected as sample. Data was collected using Job Content Questionnaire and Job Satisfaction Survey Questionnaire. After the data was collected, it was analyzed using SPSS version16.0 statistical software. The results were analyzed using of descriptive statistics followed by inferential statistics on the variables. RESULTS: The result revealed that control variables (gender, age, educational qualification, and work experience) accounted for a significant increment explaining 2.1 percent of the variance in job satisfaction. Job demand and social support together explained 24.5 percent of job satisfaction. Job demand(ß=-0.152; p<0.01) had significant but negative relationship with job satisfaction and social support (ß=0.458; p<0.01) had significant and positive relationship with job satisfaction. On the other hand, job control (ß=0.042; p>0.05) did not have a significant relationship with job satisfaction. Furthermore, there was no straight three-way interaction effect among job demand, job control and social support (ß=0.05, p>0.05). CONCLUSION: Job demand and social support are related to nurses' job satisfaction, but job control neither related to nor moderated the relationship between job demands and job satisfaction. Furthermore, there was no joint three-way interaction effect among job demand, job control and social support.

Barriers to recruitment for surgical trials in head and neck oncology: a survey of trial investigators.

OBJECTIVES: Many randomised trials in surgery suffer from recruitment rates that lag behind projected targets. We aim to identify perceived barriers to recruitment among these pioneering trials in the field of head and neck cancer surgery. DESIGN: Recruiting centres to all three trials (Selective Elective Neck Dissection (SEND), Positron Emission Tomography (PET)-Neck and Hyperbaric Oxygen in the Prevention of Osteoradionecrosis (HOPON)) were contacted by email by the chief investigators. Responders were asked to complete a web-based survey in order to identify the barriers to recruitment in their centre and grade each by severity. SETTING: Secondary care: 44 head and neck oncology regional referral centres. PARTICIPANTS: Analysis was based on 85 responses evenly distributed between the three trials. RESULTS: The most commonly identified perceived barriers to recruitment (more than 50% of responders identified the item as a barrier in all the three trials) in the order of frequency were: patients consent refusal because of expressed treatment preference, patients consent refusal owing to aversion to randomisation, excess complexity/amount of information provided to patients and lack of time in clinic to accommodate research. The most severely rated of these problems was consent refusal because of the expressed treatment preference and lack of time in the clinic. CONCLUSIONS: Our findings confirm others' work in surgery that the most significant barrier to trial recruitment in head and neck cancer surgery is the patient's preference for one arm of the trial. It may be that additional training for those taking consent may be helpful in this regard. It is also important to adequately resource busy surgical clinics to support clinical trial recruitment.

Developing a survey of barriers and facilitators to recruitment in randomized controlled trials.

BACKGROUND: Recruitment to randomized controlled trials is known to be challenging. It is important to understand and identify predictors of good or poor accrual to a clinical trial so that appropriate strategies can be put in place to overcome these problems and facilitate successful trial completion. We have developed a survey tool to establish the recruitment experience of clinical teams regarding facilitators and barriers to recruitment in a clinical trial and describe herein the method of developing the questionnaire. METHODS: A literature search was conducted to identify studies that have explored facilitators and barriers to recruitment, and a list of potential factors affecting recruitment to a clinical trial was generated. These factors were categorized in terms relating to the (i) trial, (ii) site, (iii) patient, (iv) clinical team, (v) information and consent and (vi) study team. A list was provided for responders to grade these factors as weak, intermediate or strong facilitators or barriers to recruitment. RESULTS: A web-based survey questionnaire was developed. This survey was designed to establish the recruitment experience of clinical teams with regard to the perceived facilitators and barriers to recruitment, to identify strategies applied to overcome these problems, and to obtain suggestions for change in the organization of future trials. The survey tool can be used to assess the recruitment experience of clinical teams in a single/multicenter trial in any clinical setting or speciality involving adults or children either in an ongoing trial or at trial completion. The questionnaire is short, easy to administer and to complete, with an estimated completion time of 11 minutes. CONCLUSIONS: We have presented a robust methodology for developing this survey tool that provides an evidence-based list of potential factors that can affect recruitment to a clinical trial. We recommend that all clinical trialists should consider using this tool with appropriate trial-specific adaptations to monitor and improve recruitment performance in an ongoing trial or conduct the survey at trial completion to gather information on facilitators and barriers to recruitment that can form the basis of interventions and strategies to improve recruitment to future clinical trials.

Inflammatory fibroid polyp (Vanek's tumour), an unusual large polyp of the jejunum: a case report.

We report the case of a 46-year-old man who presented with recurrent episodes of severe upper abdominal pain over a period of three months. A computerized tomography scan of his abdomen demonstrated a large non-obstructing jejunal mass. He underwent laparotomy and resection of a 13.5 cm tumour from the distal jejunum. Histopathological examination confirmed a large inflammatory fibroid polyp of the jejunum. The clinical presentation and microscopic features are discussed.

What is submitted and what gets accepted in Indian Pediatrics: analysis of submissions, review process, decision making, and criteria for rejection.

OBJECTIVES: To identify the characteristics of the manuscripts submitted to the Indian Pediatrics; attributes of the peer-review process and decision-making; and factors associated with their acceptance or rejection. METHODS: All submissions to Indian Pediatrics during 2002 were analyzed by a retrospective review of records. Manuscripts were categorized by their place of origin (Indian vs. foreign), geographic region of India (north, south, east, west, central), submitting institution (teaching vs. non-teaching), subject (general pediatrics, systemic pediatrics, neonatology, genetic syndrome, allied sub-specialities, etc.), and type of article (research paper, case report, images, letter to editor, review, etc.). Manuscript details were recorded in a database that also included information on peer reviewer assignment, editorial and reviewer comments, and final disposition of the manuscript. Characteristics of accepted and rejected manuscripts were compared. RESULTS: Indian Pediatrics received 687 manuscripts for consideration in the year 2002; mostly from Indian authors (89%). Maximum contributions were received from North India (236, 39%) followed by 165 (27%) from South, 95 (16%) from West, 90 (15%) from Central and 26 (4%) from Eastern part of India. Of 687 papers, 457 (66%) articles qualified for peer review. Agreement between the reviewers was not significantly greater than that expected by chance; kappa for inter-rater agreement was 0.35, 0.17 and 0.21 between any two sets of reviewers for 431, 228 and 203 articles, respectively (P < 0.005). Of 687 submitted manuscripts, 294(43%) were accepted, 347(50%) were rejected and no decision was possible on 46(7%) manuscripts. The top reasons for rejection were 'absence of a message', 'lack of originality', 'inadequate methods', 'not relevant to journal', 'over-interpretation of results', 'unsatisfactory writing style', 'inaccurate/inconsistent/insufficient data', and 'inappropriate statistical analysis', in that order. Median number of days (IQR) needed to reach the final decision was 81 (25-210) d; ranging from 8 (3-29.5) d for Images to 180 (90-341) d for Research papers. No preference for acceptance was noted for foreign articles, geographic region of India, type of institution, or a particular topic, on both univariate and multivariate analysis. CONCLUSION: Indian Pediatrics is receiving contributions from all over India. Majority of the manuscripts are peer-reviewed. Of every 10 articles submitted, almost 4 are accepted. Median time interval from submission to final decision is less than 3 months. The decision-making is not influenced by the place of origin of manuscript.

A new method of assessing anal sphincter integrity using inverted vectormanometry.

PURPOSE: Vectorgraphy as an integrated mapping of radial pressure profiles of the anal canal has been used to attempt identification of pressure-related defects with doubtful reliability since vectorgraphs bear no resemblance to endoanal ultrasound scans at similar levels in the anal canal. This study aimed to devise a technique to enable vectorgraphy to be more representative of sphincter function and integrity. METHODS: Vectormanometry was performed in 50 patients with anorectal disorders using an Arndorfer pneumohydraulic system. "Normal" three-dimensional manometric images of each 0.5 cm of the anal sphincter were computer-generated by plotting anal pressures at rest and during squeeze radially around a central zero axis. The graphs were replotted with zero at the periphery and maximal anal pressure at the center. Both this ("inverted") and "normal" vectorgraphs were compared with endoanal ultrasound images at similar levels, assessing both internal and external anal sphincters. RESULTS: Standard vectormanometry produced excellent pictures of pressures throughout the anal canal; the anatomy however bore no resemblance to the pictures produced by endoanal ultrasound. The inverted vectographs showed a much better correlation with endoanal ultrasound at each 0.5-mm level of the anal canal, for both squeeze pressure graphs and external sphincter correlations and for resting pressure graphs and internal sphincter correlations. CONCLUSIONS: Accurate assessment of sphincter integrity is not possible when interpreting the vectormanometry graphs in the current format; however, inverted vectorgraphy gives good correlations with endoanal ultrasound and provides combined functional (pressure measurement) and anatomic (three-dimensional profile) information regarding the anal canal.

Clinical significance of polymicrobial bacteremia in newborns.

OBJECTIVE: To identify whether polymicrobial bacteremia in newborns is associated with any predisposing factors, distinguishing clinical features, or higher mortality. METHODS: Results of blood cultures obtained over a period of 1 year from neonates admitted to the paediatric ward and Neonatal Intensive Care Unit of a tertiary care hospital were retrospectively analysed. The study group included all cases with polymicrobial bacteremia (isolation of two or more organisms). Controls (double the number of study cases) were randomly selected from the monomicrobial group. Case records of included cases were retrieved and scrutinized. RESULTS: Of 770 positive cultures during the study period, 52 (6.8%) cultures were positive for more than one organism. Complete case records were retrieved for 40 polymicrobial and 78 monomicrobial cases. The two groups were comparable for maternal and neonatal parameters including: maternal and obstetric complications; period of gestation; mode of delivery; birthweight and perinatal asphyxia; clinical symptomatology; invasive therapeutic interventions; and mortality. CONCLUSIONS: Isolation of more than one organism from the blood culture of a suspected septic newborn is not rare. It does not always represent a true invasion by multiple organisms. Polymicrobial isolation per se should not be the criterion for hastily changing the therapeutic decisions.

A randomized trial of eutectic mixture of local anesthetics during lumbar puncture in newborns.

OBJECTIVE: To determine the efficacy of a topical anesthetic cream, eutectic mixture of local anesthetics (EMLA), in alleviating pain associated with lumbar puncture in newborns. DESIGN: Randomized double-blind placebo-controlled trial. SETTING: Neonatal intensive care unit of a university teaching hospital. Patients Sixty consecutive newborns (gestational age, >or=34 weeks) undergoing diagnostic lumbar puncture. Intervention Topical application of 1 g of EMLA or placebo 60 to 90 minutes before lumbar puncture. MAIN OUTCOME MEASURES: Heart rate, transcutaneous oxygen saturation level, and total behavioral score recorded on a video camera and graded according to the Neonatal Facial Coding System. RESULTS: Compared with baseline, all newborns experienced pain as evidenced by increased heart rate, decreased oxygen saturation level, and total behavioral score (all within-groups differences were significant using repeated-measures analysis of variance; P<.001) during the procedure. Compared with placebo, EMLA significantly attenuated the pain response as shown by a lower mean +/- SE heart rate (per minute), particularly at needle insertion (EMLA: 159.3 +/- 2.3; placebo: 175.2 +/- 2.7; P<.001) and needle withdrawal (EMLA: 153.8 +/- 2.6; placebo: 167.3 +/- 2.5; P<.001), and a lower mean +/- SE total behavioral score, again at insertion (EMLA: 4.0 +/- 0.3; placebo: 5.0 +/- 0.0; P =.004) and withdrawal (EMLA: 1.8 +/- 0.3; placebo: 3.9 +/- 0.3; P<.001). There was no statistically significant difference between groups with regard to oxygen saturation level. CONCLUSIONS: Lumbar puncture in newborns produces pain responses. Eutectic mixture of local anesthetics is an efficacious agent for reducing the pain associated with needle insertion and withdrawal during lumbar puncture in newborns.

Rectoanal reflex parameters in incontinence and constipation.

PURPOSE: The transient relaxation of the internal anal sphincter in response to rectal distention is believed to play an important role in the continence mechanism. Most anorectal physiology laboratories merely report the rectoanal inhibitory reflex as being either present or absent. This study aimed to assess the parameters of the rectoanal inhibitory reflex in incontinent and constipated patients and healthy control subjects, in an attempt to analyze differences in internal anal sphincter function in these groups. We analyzed each response of the internal anal sphincter to rectal distention with progressively increasing volumes of air at a single site (proximal anal canal). METHODS: Fifty-five constipated and 99 incontinent patients and healthy control subjects underwent manometry. Various parameters of the rectoanal inhibitory reflex were analyzed, and percentage sphincter relaxation was calculated at each volume at which rectoanal inhibitory reflex occurred. RESULTS: There was no difference in the volume of rectal distention required to elicit sensation (P = 0.626) or the rectoanal inhibitory reflex (P = 0.371) in the three groups. There was a significant correlation between the volume required to elicit the rectoanal inhibitory reflex and that at which sensation was first felt only in the incontinent (P = 0.0001) group. Significantly greater sphincter relaxation was seen at each volume (P = 0.001) in the incontinent as compared with the constipated patients. With progressive rectoanal inhibitory reflex, consistently progressive increases in internal anal sphincter relaxation were found only in the incontinent group. This consistent relationship was not seen in the constipated patients or in healthy control subjects. CONCLUSIONS: Assessment of various parameters of the rectoanal inhibitory reflex yielded important information regarding the continence mechanism. Altered responses of the internal anal sphincter in anorectal disorders plays a role in the associated physiologic impairment. This may have significant clinical implications with regard to sphincter-saving resections.