Strategies to Mitigate Chemotherapy and Radiation Toxicities That Affect Eating

Background: Cancer and its therapy is commonly associated with a variety of side effects that impact eating behaviors that reduce nutritional intake. This review will outline potential causes of chemotherapy and radiation damage as well as approaches for the amelioration of the side effects of cancer during therapy. Methods: Information for clinicians, patients, and their caregivers about toxicity mitigation including nausea reduction, damage to epithelial structures such as skin and mucosa, organ toxicity, and education is reviewed. Results: How to anticipate, reduce, and prevent some toxicities encountered during chemotherapy and radiation is detailed with the goal to improve eating behaviors. Strategies for health care professionals, caregivers, and patients to consider include (a) the reduction in nausea and vomiting, (b) decreasing damage to the mucosa, (c) avoiding a catabolic state and muscle wasting (sarcopenia), and (d) developing therapeutic alliances with patients, caregivers, and oncologists. Conclusions: Although the reduction of side effects involves anticipatory guidance and proactive team effort (e.g., forward observation, electronic interactions, patient reported outcomes), toxicity reduction can be satisfying for not only the patient, but everyone involved in cancer care.

Contraceptive Use in Women with Inherited Metabolic Disorders: A Retrospective Study and Literature Review

Background Reproductive planning is an emerging concern for women with inherited metabolic disease (IMD). Anticipatory guidance on contraception is necessary to prevent unintended pregnancies in this population. Few resources exist to aid informed decision-making on contraceptive choice. A retrospective case-control study was performed to examine trends in reproductive planning for adolescent and adult women seen at the Children’s Hospital of Philadelphia (CHOP). Literature review on contraception and IMD was performed to assess global use. Results In a cohort of 221 reproductive-aged female IMD patients, 29.4% reported routine contraceptive use. Anticipatory guidance on contraception was provided by metabolism doctors to 36.8% of patients during the study period. Contraception discussion was more likely to occur in women older than 21 years, who lived independently and were followed by gynecology. Women who received contraception counseling from their metabolism provider were 40-fold more likely to use regular contraception. Use of combined hormonal contraceptives was most commonly reported, but contraception choice varied by age and IMD. Conclusion Metabolism providers are ideally suited to provide guidance on contraception to women with IMD. Reproductive planning should be addressed routinely using shared decision-making. Contraceptives should be selected for their efficacy, effects on metabolism, and likelihood of patient adherence.

Differentiation of Pediatric-Onset Duchenne and Becker Muscular Dystrophy Subphenotypes Using the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet)

Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD) phenotypes are used to describe disease progression in affected individuals. However, considerable heterogeneity has been observed across and within these two phenotypes, suggesting a spectrum of severity rather than distinct conditions. Characterizing the phenotypes and subphenotypes aids researchers in the design of clinical studies and clinicians in providing anticipatory guidance to affected individuals and their families. Using data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), we used K-means cluster analysis to group phenotypically similar males with pediatric-onset dystrophinopathy. We identified four dystrophinopathy clusters: Classical BMD, Classical DMD, late ambulatory DMD, and severe DMD. The clusters that we identified align with both ‘classical’ and ‘non-classical’ dystrophinopathy described in the literature. Individuals with dystrophinopathies have heterogenous clinical presentations that cluster into phenotypically similar groups. Use of clinically-derived phenotyping may provide a clearer understanding of disease trajectories, reduce variability in study results, and prevent exclusion of certain cohorts from analysis. Findings from studying subphenotypes may ultimately improve our ability to predict disease progression.

Using Human-Centered Design in Personalized Anticipatory Guidance: Enriching Anticipatory Guidance on Early Cognitive and Language Development

In this study, we aimed to create a novel tool to assist providers at 2 Chicago-area Federally Qualified Health Centers in giving guidance on early cognitive and language development during well-child visits. We utilized a human-centered design (HCD) process to address specific barriers to providing this guidance and create a tool shaped by the needs of providers and parents. Phase I involved collaborative prototype design; phase II involved implementation, feedback gathering, and responsive iterations of the tool; and phase III involved a collective review of the HCD process. The final version of the tool was a concise, colorful, and parent-accessible “Brain Building Guide” intended for interactive provider and parent use. It featured personalized information about parental knowledge and suggested areas for guidance. It was both satisfactory to stakeholders and efficacious in improving parental knowledge immediately post-visit and 1 month out. It should be further evaluated in a randomized controlled trial.

Social Media as a Source of Medical Information for Parents of Premature Infants: A Content Analysis of Prematurity-Related Facebook Groups

Objective Parents are increasingly turning to social media for medical recommendations. Our objective was to systematically examine posts on Facebook for parents of infants hospitalized in the neonatal intensive care unit (NICU) to analyze how advice on medical topics was requested and given, and whether this advice was potentially medically inappropriate. Study Design One hundred Facebook groups were screened for study eligibility. In each group, up to 400 posts on medical topics were evaluated. The first 10 comments of each post were classified based on content and presence of medical advice. Appropriateness of advice was evaluated by a neonatologist. Results Of 28 groups meeting study criteria, 10 permitted access for data collection. We identified 729 posts requesting medical advice of which 29% referenced the NICU period. Posts on diagnosis and development (30 and 32% of posts, respectively) were the most common topics, and most likely to receive advice (78 and 76% of posts on these topics, respectively). We identified 238 comments containing potentially inappropriate medical advice and 30 comments recommending going against medical advice. Conclusion Parents are utilizing Facebook as a source of support and medical information. Parents are most likely to give development-related advice from their own parenting experiences. The high percentage of posts requesting advice about diagnosis and development in the post-NICU stage suggests parents seek increased anticipatory guidance. Key Points

Characterizing the Heterogeneity of Aging: A Vision for a Staging System for Aging

Introduction: Older adulthood encompasses several decades of change and heterogeneity. Primary care providers need a geriatric comprehensive vision for defining older adult subpopulations.Methods: Using PubMed and Google searches, we reviewed the literature on epidemiology of age-related physiological changes, age-related diseases and geriatric syndromes, functional state, and emotional and social changes. We divided old age into strata based on chronological age and strata based on functional state, disease burden, and geriatric syndromes.Results: We describe 4 chronological-age strata beginning at age 60, and 4 functional-age strata based on frailty according to a modified clinical frailty scale. We provide clinical considerations and anticipatory guidance topics for each of the age strata and functional strata.Conclusion: Chronological age, functional status, chronic disease burden and geriatric syndromes, and life expectancy are all important domains that impact clinical care and appropriate anticipatory guidance for individual older adults. Better knowledge for differentiating subpopulations of older adults may improve clinical care, reduce medical overuse, improve personalized anticipatory guidance, and focus on the impact of functional state on the quality of life.

“Will You Still Feel Beautiful When You Find Out You Are Different?”: Parents’ Experiences, Reflections, and Appearance-Focused Conversations About Their Child’s Visible Difference

To investigate parents’ reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: “Managing emotions: A dynamic process,” “Through another lens: External reminders of difference,” and “Awareness of difference: Approaching the child.” Findings suggest that although parents learned to accept and love their child’s visible difference, external factors such as appearance-altering surgery and other people’s reactions activated difficult emotions in parents. Parents struggled to decipher whether and when to raise appearance-related issues with their child, and how this could be done without distressing the child. Anticipatory guidance that facilitates positive appearance-focused conversations both within and outside the home seems to be needed. Parenting skills could also be strengthened by preparing parents for social reactions to the child’s visible difference, and their child’s changed appearance following surgery.