Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher.

PLAIN ENGLISH SUMMARY: There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the public are not always involved in all stages of the research. There is often no explanation as to why they were only involved in some stages of the research and not others. Additionally, there is often no description of researchers' or PPI contributor's experiences of involvement. This also raises another issue which is a lack of recording of impact such involvement can have on the research process and the people involved in the research. In this paper, we present what PPI in a doctoral research should look like by providing a detailed description of how involvement occurred from pre-funding to dissemination stages of the research process. We provide some practical examples of how this was done and how involving patients made a difference to the research project. Finally, we present reflections from the patient and public contributors and the researcher on involvement in this project along with some recommendations for future doctoral and postdoctoral researchers considering involving public/patient contributors in their research. ABSTRACT: Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers' and PPI contributors' personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher's reflections and key recommendations for involving people specifically in doctoral research.Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle.Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience.Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

Massive cerebral air embolism on ante mortem CT head following pneumothorax in a child with pneumonia.

Cerebral air embolism (CAE) is a rarely reported complication of a common condition like pneumothorax, presenting with deterioration of sensorium and cardiovascular instability. We report a case of 3-year-old male who developed pneumothorax after positive pressure ventilation followed by deterioration of sensorium. CT head revealed massive CAE.

Zinc supplementation in severe acute lower respiratory tract infection in children: a triple-blind randomized placebo controlled trial.

OBJECTIVE: To evaluate the efficacy of zinc supplementation on duration of illness in children with severe acute lower respiratory tract infection (ALRTI). METHODS: This randomized triple-blind placebo-controlled trial was conducted in pediatric emergency of a teaching referral hospital. Children in the age group of 2-24 months presenting to pediatric emergency with severe ALRTI were included. Eligible children were randomly allocated to zinc (n=53) or control (n=53) groups. Zinc group received 20 mg of elemental zinc per day (5 ml syrup per day) as a single daily dose for 5 days. Control group received an equal amount of placebo which was appropriately modified to give the taste, smell, color and consistency similar to zinc mixture. Primary outcome was 'time to be asymptomatic', a composite outcome defined as resolution of all four of the following: danger signs, respiratory distress, tachypnea and hypoxia in room air. RESULTS: Age, gender, nutritional status, pretreatment zinc levels and other demographic and clinical variables were similar in the two groups. 'Time to be asymptomatic' was comparable in the two groups (h; median (IQR): 60 (24-78) vs. 54 (30-72), P=0.98]. At any time point a similar proportion of children were symptomatic in both the groups. Time to resolution of respiratory distress, tachypnea, dangers signs and hypoxia were also similar in two groups. Duration of hospital stay was shorter by 9 h in the zinc group but the difference was statistically insignificant. CONCLUSION: Zinc supplementation did not reduce recovery time and duration of hospital stay in children with ALRTI. Larger randomized controlled trials are needed to evaluate role of zinc in ALRTI.

Antisnake venom in a neonate with snake bite.

There is no report of the use of antisnake venom (ASV) in the neonatal age group in literature. We report a 27 days old female neonate who presented with neuroparalytic manifestations of snake bite and was treated successfully with ASV. A total of 50 vials (500 mL) of polyvalent antisnake venom were given as infusion in hourly aliquots of 50 mL, over 72 hours.

Phenobarbitone for prevention and treatment of unconjugated hyperbilirubinemia in preterm neonates: a systematic review and meta-analysis.

OBJECTIVE: To evaluate the role of phenobarbitone in the management of unconjugated hyperbilirubinemia during first two weeks of life in preterm neonates. DESIGN: Meta-analysis. METHODS: A study was eligible for inclusion in the metaanalysis if it randomized preterm neonates into control and treatment groups. Standard search strategy of the Cochrane Neonatal Review Group was used. For categorical and continuous data the odds ratio (OR) and weighted mean difference (WMD) were calculated, respectively. 95% confidence intervals were used and a fixed effects model was assumed for the metaanalysis. MAIN OUTCOME MEASURES: Peak serum bilirubin, duration of phototherapy, need of phototherapy and exchange transfusion, neurodevelopmental outcome and adverse effects. RESULTS: A total of 19 potentially relevant studies were identified. Of these, 3 studies (497 neonates) were included in the metaanalysis. Peak serum bilirubin was significantly lower in phenobarbitone group (mean difference: -1.78 mg/dL, 95% CI: -2.29 to -1.27). Duration of phototherapy was shorter (mean difference: -14.75 h, 95% CI: -26.67 to -2.83). Need of phototherapy (OR: 0.33, 95% CI: 0.13 to 0.81) and exchange transfusion (OR: 0.30, 95% CI: 0.14 to 0.64) were also reduced in phenobarbitone group. CONCLUSION: Phenobarbitone reduces peak serum bilirubin, duration and need of phototherapy and need of exchange transfusion in preterm very low birthweight neonates. Further studies are warranted to evaluate adverse effects and neurodevelopmental outcome.

Bilirubin rebound after intensive phototherapy for neonatal jaundice.

This study was conducted to determine the incidence and magnitude of post-phototherapy bilirubin rebound in neonates. Subjects included inborn neonates needing phototherapy for hyperbilirubinemia. Standard guidelines were used to start and stop phototherapy. Rebound bilirubin was measured 24+/-6 h after stopping phototherapy. Significant bilirubin rebound (SBR) was defined as post-phototherapy bilirubin level needing reinstitution of phototherapy. Among 245 neonates with hyperbilirubinemia, post-phototherapy bilirubin estimation was done in 232 neonates. A total of 17 (7.3%) neonates developed SBR. In neonates with SBR, bilirubin increased by 2.3 mg/dL (95% CI 1.6-3.0) after stopping phototherapy. Risk factors for SBR included birth at >35 weeks of gestation (RR 4.3, 95% CI 1.5-12.0), birthweight <2000 g (RR 3.2, 95% CI 1.0-10.3) and onset of jaundice at >60 h of age (RR 3.3, 95% CI 1.2-9.0). Post-phototherapy discharge and follow-up planning should take into account these risk factors.

Isolated ptosis as acute ophthalmoplegia without ataxia, positive for anti-GQ1b immunoglobulin G.

Anti-GQ1b IgG antibody syndrome comprises a wide range of diseases presenting with ophthalmoplegia and ataxia. Anti-GQ1b antibodies have been strongly associated in the literature with Miller Fisher Syndrome, with acute ophthalmoplegia associated with Guillain-Barré syndrome, and with isolated ophthalmoplegia. Acute ophthalmoplegia presents as various combinations of external and internal ophthalmoplegia. Reported here is a novel case of isolated ptosis as a manifestation of ophthalmoplegia. The present finding of bilateral ptosis and areflexia with anti-GQ1b IgG antibody positivity helps confirm the existence of the syndrome. Further research is needed on diagnosis and treatment.

Medication errors in neonates admitted in intensive care unit and emergency department.

BACKGROUND: Medication is the most common health-care intervention, and the errors arising out of its usage are potentially an avoidable cause of iatrogenic injuries. There are reports of medication errors from neonatal emergency setups. AIMS: To study the medication errors of ordering, dispensing and administering in neonates admitted for emergency care and to compare the errors occurring in the emergency department (ED) with those occurring in the neonatal intensive care unit (NICU) of a teaching hospital in north India. PRIMARY OBJECTIVE: To study the medication errors in ordering and dispensing for neonates. SECONDARY OBJECTIVE: To compare these errors in 2 different settings--ED and NICU. MATERIALS AND METHODS: We did a retrospective chart review of neonatal prescriptions written in the 4 months from January to April 2004 in the neonatal intensive care unit and the pediatric emergency department. The prescriptions were analyzed from the case records bearing an even registration number, obtained from the hospital 'medical records' section. Medication error was defined as 'any preventable event that occurs in the process of ordering, transcribing, dispensing, administering or monitoring a drug irrespective of whether the injury occurred or potential for injury was present! RESULTS: A total of 821 prescriptions were analyzed and 81 (9.6%) errors were detected. The error rate was found to be 1.5 (54/38) and 0.7 (27/38) per patient in ED and NICU, respectively, being highly significant in ED. Every tenth prescription had medication error in ordering or dispensing; of this, every sixth prescription in ED and nineteenth prescription in NICU had medication error. Dosing errors were the commonest form of detected errors. None of the errors caused any significant harm to the patient but had the potential to cause severe injury, and majority of these errors were preventable. CONCLUSION: Medication errors are common in neonatology; more so, in emergency departments than in the neonatal intensive care units.

Experience with Kangaroo mother care in a neonatal intensive care unit (NICU) in Chandigarh, India.

OBJECTIVE: To study the feasibility and acceptability of Kangaroo mother care (KMC) on the low birth weight infants (LBWI) in the neonatal intensive care unit (NICU) by the mothers, family members and health care workers (HCW) and to observe its effect on the vital parameters of the babies. METHOD: A observation in the NICU. RESULTS: A total of 135 babies (74 boys and 61 girls) who completed minimum of 4 hrs of KMC/day, were included. The mean birth weight and gestation were 1460 gm and 30 week respectively. 47% babies started KMC within first week of age. Mean duration of KMC was 7 days (3-48) days. The O(2) saturation improved by 2-3%, temperature ( degrees C) rose from 36.75 +/- 0.19 to 37.23 +/- 0.25, respiration stabilized (p<0.05 for all) and heart rate dropped by 3-5 beats. No episodes of hypothermia or apnea were observed during KMC. KMC was accepted by 96 % mothers, 82% fathers and 84% other family members. 94% HCW considered it to be safe and conservative method of care of LBWI. Benefits of KMC on the babies' behavior and on maternal confidence and lactation were reported by 57%, 94% and 80% respectively. A decline in use of heating devices in the NICU was reported by 85% and 79% said it did not increase their work load. CONCLUSION: KMC was found to be safe, effective and feasible method of care of LBWI even in the NICU settings. Positive attitudes were observed in mothers, families and HCW.

Ectrodactyly/split hand feet malformation.

Split-hand/split-foot malformation is a rare limb malformation with median clefts of the hands and feet and aplasia/hypoplasia of the phalanges, metacarpals and metatarsals. When present as an isolated anomaly, it is usually inherited as an autosomal dominant form. We report a case of autosomal recessive inheritance and discuss the antenatal diagnosis, genetic counseling and treatment for the malformation.

Exchange transfusion as an alternative therapy for recurrent severe Guillain-Barre syndrome.

Recurrent Guillain-Barre Syndrome is a rare condition. IVIg and plasmapheresis are costly therapies and may not be affordable. We report a 6-yr-old boy in whom two severe episodes of Guillain-Barre Syndrome were successfully treated by exchange transfusion. Possible explanation for its effectiveness is discussed with respect to available literature.

Recurrent nocturnal tongue biting in a child with hereditary chin trembling.

A 13-month-old boy presented with repeated episodes of tongue biting during sleep. On evaluation, he was found to have hereditary chin trembling, a rare autosomal dominant condition characterized by continuous or intermittent tremulous activity of the mentalis muscle. This is the first report of this kind from India. The tongue biting appeared to be the result of parasomnia. Treatment with clonazepam was very effective; it completely ameliorated the symptom of tongue biting but had no effect on chin trembling.

Neonatal arrhythmias.

OBJECTIVE: Neonatal arrhythmias are not uncommon; however, they rarely cause hemodynamic compromise. This paper aims to study the etiology, spectrum and outcome of neonates with arrhythmias who presented to a pediatric department. METHODS: All neonates, either inborn or brought to the pediatric emergency with rhythm disorders, between August 1999 to August 2002, were included prospectively. Evaluation including a search for secondary causes of rhythm disorder and a chest X-ray, standard 12-lead electrocardiography and echocardiography in all. The management required in each and the outcomes were noted. RESULTS: Nine neonates were identified, of which 4 were inborn. Tachycardia was seen in 8 neonates and bradycardia in only one. Three neonates had an antenatal onset of arrhythmias; in the rest it was postnatal in onset. Five neonates had a secondary rhythm disorder, secondary to metabolic derangements in 4 and a cardiac mass in 1. Five had ventricular arrhythmias and 5 had hemodynamic compromise due to the arrhythmia. The outcome was poor in 4 and was related to the underlying illness. CONCLUSION: Tachyarrhythmia is more common than bradyarrhythmia in the neonate. Arrhythmias secondary to various metabolic causes are more common than primary rhythm disorders.

Prevalence of anemia among school going adolescents of Chandigarh.

This study was conducted to assess the prevalence of anemia and determine serum ferritin status among 1120 apparently healthy adolescents (12 to 18 years) sampled from 11 city and 2 rural schools in Chandigarh. All the boys and the girls were subjected to anthropometric examination and hemoglobin estimation. The estimation of hemoglobin was done by cyanmethemoglobin method. Serum ferritin was estimated by ELISA (UB1 Magiwel enzyme immuno assay) method in 183 students. The overall prevalence of anemia calculated as per WHO Guidelines was significantly higher among girls (23.9%) as compared to boys (odds ratio--3.75, 95% CI--2.59 to 5.43, P < 0.01). Anemia was observed more in rural (25.4%) as compared to urban (14.2%) adolescents (OR--0.49, 95% CI--0.34 to 0.70, P < 0.01). Iron stores estimated by serum ferritin in 183 subjects were deficient in 81.7% and 41.6% of the adolescent girls and boys, respectively.

Kocher Debre Semelaigne syndrome--a case report and review of literature.

A case of muscular hypertrophy in a hypothyroid 12-year-old male child, known as Kocher Debre Semelaigne syndrome, is reported with review of the relevant literature. The patient responded well to l-thyroxine therapy.

Persistent coagulopathy in snake bite.

Bleeding diathesis is a cardinal feature of viperine bite, which has been thought to last not more than 24 hours. There is scarcity of literature about prolonged bleeding disorder in snake envenomation. Various explanations suggested in the literature include-temporary decrease in antivenin levels, rapid elimination of antivenin from circulation or continuous release of unneutralised venom from the envenomated site. Two children with prolonged coagulopathy lasting for more than a week, correction of which required more than 300 ml of antisnake venom are reported here.