Design and Evaluation of a Novel Mobile Phone Application to Improve Palliative Home-Care in Resource-Limited Settings.

CONTEXT: Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. OBJECTIVES: This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. METHODS: A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. RESULTS: N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. CONCLUSION: An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.

Running Palliative Care Services at the Institute of Palliative Medicine, Kozhikode, Amid COVID-19 Pandemic: A Strengths, Weaknesses, Opportunities, and Threats Analysis.

CONTEXT: COVID-19 pandemic and nationwide lockdown has affected the health system. Many health-care facilities are prioritizing their services, and hence, those suffering from life-limiting conditions will have difficulty in accessing health services. AIMS: The aim of the study was to perform a Strengths, Weaknesses, Opportunities and Threats (SWOT) analysis of the palliative care (PC) services provided by the Institute of Palliative Medicine (IPM), Kozhikode, amid COVID-19 pandemic. SETTINGS AND DESIGN: A SWOT analysis of PC services provided by IPM. SUBJECTS AND METHODS: The data for SWOT analysis was collected by brainstorming and review of records and registers. RESULTS: Good prioritization and documentation system and routinely adhering to infection control practices are notable strengths. Lack of funding and interrupted supply of personal protective equipment are notable weaknesses. Availability of established communication channels with active community participation are a few opportunities available to improve the services. Working with high-risk groups, return of Non-residential Indians (NRI), lack of transparency and stigma among the general public are the threats that can affect the service delivery. CONCLUSIONS: Having good prioritization and documentation system, reinforcing infection control practices, already established emergency homecare system, presence of a well-developed network of community-based PC services, and a vast network of community volunteers and awareness and cooperation of families had helped IPM to quickly reorganize its services and transition smoothly to continue to provide PC for those suffering from life-limiting illnesses in this pandemic situation.

Primary palliative care competency framework for primary care and family physicians in India-Collaborative work by Indian Association of Palliative Care and Academy of Family Physicians of India.

The discrepancy in the demand for palliative care and distribution of specialist palliative care services will force patients to be eventually cared for by primary care/family physicians in the community. This will necessitate primary care/family physicians to equip themselves with knowledge and skills of primary palliative care. Indian National Health Policy (2017) recommended the creation of continuing education programs as a method to empower primary care/family physicians. With this intention, a taskforce was convened for incorporating primary palliative care into family/primary care practice. The taskforce comprising of National and International faculties from Palliative Care and Family Medicine published a position paper in 2018 and subsequently brainstormed on the competency framework required for empowering primary care/family physicians. The competencies were covered under the following domains: knowledge, skills and attitude, ethical and legal aspects, communication and team work. The competency framework will be presented to the National Board of Examinations recommending to be incorporated in the DNB curriculum for Family Medicine.

Pain Management in Children With Cancer Using World Health Organization Guidelines at a Tertiary Cancer Center in Rural India.

Management of cancer pain among children is a difficult process due to the way they perceive pain, their dependence on parents, complexity of assessment, and limited availability of safe analgesics. Pain among children with cancer is still a less explored problem in India. This descriptive study was carried out in a tertiary cancer center to explore the characteristics of pain and its management among the children with cancer. We analyzed children diagnosed with hematologic malignancies, aged 4-18 years, admitted between January 2013 and December 2017. This retrospective cohort study involved the review of patient records available at the medical records department. During the study period, there were 290 admission episodes, of which 93 (32.1%) episodes were associated with pain. Of these 93 episodes, 14 (15%) were primarily for pain management. Step I analgesic was utilized in the majority (83%) of the admission episodes involving younger age group (4-9 years) children, whereas for the older age group (10-18 years) Step 2 analgesic (tramadol) was utilized in 29 (58%) episodes, and this was found to be statistically significant (P < .001). Only in 9 (9.7%) episodes Step 3 analgesic was utilized. A significant proportion of children with hematologic malignancies had pain episodes, and these episodes in older age group children were managed with weak opioids.

Pediatric pain management in palliative care.

The management of pain in pediatric palliative care (PPC) is essential. Whilst the field of pain management has developed over the years, much of what is done in PPC is based on anecdotal evidence or adult studies. This review explores recent developments in pain management in PPC, in particular the WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. Key issues discussed include the definition, assessment, pharmacological and integrative management of pain, availability of medications, education and research. Whilst advances have been made, including publication of the guidelines, significant gaps exist in terms of the evidence base, education and access to essential medications and both interdisciplinary and international collaboration are required to meet these gaps.

Pain in children: neglected, unaddressed and mismanaged.

Pain is one of the most misunderstood, under diagnosed, and under treated/untreated medical problems, particularly in children. One of the most challenging roles of medical providers serving children is to appropriately assess and treat their pain. New JCAHO regulations regard pain as "the fifth vital sign" and require caregivers to regularly assess and address pain. Pain being a personal experience, many different terms are used to describe different sensations. Assessment of pain in children is linked to their level of development. Children of the same age vary widely in their perception and tolerance of pain.

Management of pain in leukemic children using the WHO analgesic ladder.

OBJECTIVE: To ascertain the effectiveness of WHO analgesic ladder in pain management in children with leukemia. METHODS: Children with leukemia who were referred to a pain and palliative care clinic attached to the Department of Pediatrics of a medical teaching hospital during a period of 6 months were included in the study. RESULTS: Thirty nine (39) children, who constituted 64% of children on treatment for leukemia, required referral to pain and palliative care services during the study period. Of these 92% had Acute Lymphocytic Leukemia (ALL) and 8% had Acute Non Lymphocytic Leukemia (ANLL). 95% of children had nociceptive pain and 5% had neuropathic pain. Step - 1 analgesia was effective in 12 (31%) children and 21 (54%) could be managed with Step - 2 analgesia. Step - 3 analgesia was required in only 6 (15%) children. Step 3 analgesia was required in children with neuropathic pain and bone pain. CONCLUSION: WHO analgesic ladder is effective in managing pain in children with leukemia. Majority of cases of cancer pain in children could be managed by the treating physician using non-opioids, weak opioids and adjuvants as per the WHO guidelines. Children with bone pain and neuropathic pain may require referral to specialist services and use of strong opioids like morphine. The study emphasizes the need for establishing specialist pain management services in all centres where children with cancer are treated.

Thiamine-responsive megaloblastic anemia: identification of novel compound heterozygotes and mutation update.

OBJECTIVE: To determine causative mutations and clinical status of 7 previously unreported kindreds with TRMA syndrome, (thiamine-responsive megaloblastic anemia, online Mendelian inheritance in man, no. 249270), a recessive disorder of thiamine transporter Slc19A2. STUDY DESIGN: Genomic DNA was purified from blood, and SLC19A2 mutations were characterized by sequencing polymerase chain reaction-amplified coding regions and intron-exon boundaries of all probands. Compound heterozygotes were further analyzed by sequencing parents, or cloning patient genomic DNA, to ascertain that mutations were in trans. RESULTS: We detected 9 novel SLC19A2 mutations. Of these, 5 were missense, 3 were nonsense, and 1 was insertion. Five patients from 4 kindreds were compound heterozygotes, a finding not reported previously for this disorder, which has mostly been found in consanguineous kindreds. CONCLUSION: SLC19A2 mutation sites in TRMA are heterogeneous; with no regional "hot spots." TRMA can be caused by heterozygous compound mutations; in these cases, the disorder is found in outbred populations. To the extent that heterozygous patients were ascertained at older ages, a plausible explanation is that if one or more allele(s) is not null, partial function might be preserved. Phenotypic variability may lead to underdiagnosis or diagnostic delay, as the average time between the onset of symptoms and diagnosis was 8 years in this cohort.

Thiamine responsive megaloblastic anemia.

This report describes a female child with thiamine responsive megaloblastic anemia syndrome (Rogers syndrome), presenting with anemia and diabetes mellitus responding to thiamine. She also had retinitis pigmentosa. The anemia improved and blood sugar was controlled with daily oral thiamine. Previously unreported olfactory abnormalities, as described in Wolfram syndrome, were also present in our patient.

Temperamental traits and psychological problems of children with bronchial asthma.

Children with persistent asthma were compared with an age and sex matched control group for psychological problems and temperamental traits. Childhood Psychopathology Measurement Schedule (CPMS) and Temperament Measurement Schedule were used to assess psychological problems and temperamental traits, respectively. 69% of children in the study group scored more than the cut-off score on the CPMS compared to 13% in the control group (P < 0.01). Children in the study group showed significantly more behavior problems, conduct symptoms, anxiety, depression and emotional problems compared to children in the control group. Children with asthma also received significantly low score on the temperament dimension of rhythmicity.

Intrathecal tetanus immunoglobulins in the management of tetanus.

OBJECTIVE: To study the clinical profile, treatment and outcome of tetanus in children treated with intrathecal tetanus immunoglobulin. (TIG) METHODS: Retrospective analysis of hospital records of tetaus cases admitted to the pediatric ICU during the five year period between 1999 to 2004 was done. RESULTS: There were 66 cases of tetanus treated with intrathecal TIG. Children below 5 years formed 53% of cases and 47% were above 5 years. Totally unimmunized children constituted 82% of cases and 18% partially immunized children. The portal of entry was otogenic in 58% of cases and injury in30% of cases. The common complications observed included thrombophlebitis, aspiration pneumonia, laryngospasm and autonomic system involvement. There were no complications specific to intrathecal administration of TIG. The mortality due to tetanus was 9%. DISCUSSION: Mortality and morbidity due to tetanus was less in the present study compared to other centers where TIG is given intramuscularly. CONCLUSION: Intrathecal TIG is effective in the treatment of mild and moderate tetanus. Randomized controlled clinical trials are needed to evaluate the efficacy of intrathecal TIG in the management of severe tetanus.

Temperamental traits associated with conversion disorder.

The aim of this study was to analyze the temperamental traits associated with conversion disorder in children. Thirty children with conversion disorder attending a child guidance clinic were compared with an age and sex matched control group of normal children for life stresses and temperament dimensions. The temperament measurement schedule (TMS) and the life event scale for Indian children (LESIC) were used for evaluating the temperament dimensions and life stresses respectively. Children with conversion disorder experienced significantly more stressful life events compared to the children in the control group. The stress factors included scholastic difficulties, examination failures, punishment by teacher, conflict with peers, parental disharmony and family problems and sibling rivalry. The characteristic temperamental traits associated with conversion disorder were low emotionality and low threshold of responsiveness.