Jeff Temple, PhD, licensed psychologist, vice dean for research, UTMB School of Nursing, discusses the rising mental health crisis in adolescents and strategies for community stakeholders to mitigate this issue with AJMC® Associate Editor Matthew Gavidia.

Take a DEEP DIVE Into Medical World News

AJMC Associate Editor Matthew Gavidia sat down with Shannon Burke, SVP and general manager of health systems at Synchrony Health & Wellness, to discuss the importance of exercise on her physical and mental health and how it has improved her productivity.

Find Out What Managed Care Experts Like to Do AFTER HOURS

For our latest After Hours interview, Traci Thompson, MD, MBA, chief medical officer, Humana Healthy Horizons of Florida, discusses her drive to improve health equity in underserved east Tampa, with AJMC® Associate Editor Matthew Gavidia.

Learn About Managed Care Experts' AFTER HOURS Pursuits

Christina is the assistant managing editor for The American Journal of Managed Care® (AJMC®) and The American Journal of Accountable Care® (AJAC), and joined AJMC® in 2016. She oversees the entire process of the publication of the print journals, from manuscript submission to publication, and works with the editors in chief and editorial boards to promote the journals.

She has a BS in public health from Rutgers University. You can connect with Christina on 

A new study examined the potential of using dermoscopy to distinguish 

 (BCC) from benign skin tumors and found that despite some differences in the frequency of dermoscopic features between the conditions, dermoscopy alone is not sufficient for a reliable diagnosis.

, noted that although most cases of BCC can be diagnosed based on clinical and dermoscopic assessment, some presentations can overlap with benign adnexal skin tumors such as trichoblastic tumors (TT). The study authors noted that histopathological assessment is currently the gold standard for a differential diagnosis of TT and BCC, but they aimed to investigate whether dermoscopy could be used in clinical practice instead. Dermoscopy, a noninvasive technique using a handheld dermatoscope, is less time-consuming than excising and performing a histopathological assessment on a potential tumor.

Using medical records from the dermatology department at the Medical University of Gdańsk in Poland, the authors analyzed 502 cases of BCC and 61 cases of TT that were excised and histopathologically examined between May 2016 and August 2021. Two investigators who were blinded to the histopathological diagnosis graded clinical and dermoscopic pictures of the tumors according to predefined criteria. The clinical data included patient age and gender, as well as tumor location, size, visible pigmentation  and ulceration, and lesion morphology.

Patients with BCC tended to be older than those with TT (mean age, 71.4 vs 64.4 years, respectively; 

 = .0152), and women made up a higher proportion of the BCC group, although the difference was not statistically significant (52.0% vs 44.3%; 

 = .279). The BCC group had larger tumor size than the TT group (mean, 11.0 vs 8.2 mm; 

 = .001) and more often featured clinically visible ulceration (59.4% vs 19.7%; 

The analysis of dermoscopic variables revealed some characteristics associated with the different diagnoses: Dermoscopically visible ulceration was more common in the BCC group than the TT group (52.2% vs 14.8%; 

 < .0001) whereas pigmented structures (brown dots and brown globules), cloudy/starry milia-like cysts, and yellow globules were less common in the BCC group (all 

The study authors also created a binary classification algorithm that was tested and validated on the samples to distinguish BCC from benign tumors. It achieved an area under the curve of 79.23% (95% CI, 69.69%-88.76%), which the authors deemed insufficient for use in clinical practice, as very high sensitivity is needed when diagnosing malignant vs benign tumors given the serious consequences of false negatives.

The literature contains mixed evidence on the epidemiological and dermoscopic characteristics of TT, the authors noted, and their results contrast with some prior studies that had revealed differences in clinically observable pigmentation between BCC and TT cases.

The current study’s limitations included its retrospective and single-center design, as well as that the included patients had lighter skin phototypes.

The authors concluded that “despite differences in frequency of clinical and dermoscopic features between BCC and TT in the studied group, differential diagnosis based on these variables is not reliable based on the developed algorithm, as the overlap of the analyzed features was observed in both tumor types.” They recommended that histopathological examination remain the gold standard for diagnostic use in distinguishing BCC from TT.

Sławińska M, Płaszczyńska A, LakomyJ, et al. Significance of dermoscopy in association with clinical features in differentiation of basal cell carcinoma and benign trichoblastic tumours. 

. Published online August 17, 2022. doi:10.3390/cancers14163964

Articles

Despite some differences in the frequency of dermoscopic features between basal cell carcinoma (BCC) and benign skin tumors, dermoscopy alone is not sufficient for a reliable diagnosis, according to a recent study.

Dermoscopy Holds Limited Potential to Differentiate BCC From Benign Tumors

Julia is an associate editor for The American Journal of Managed Care® (AJMC®) and joined AJMC® in 2022. She produces written and video content covering multiple disease states, and assists in the screening process for manuscripts submitted to AJMC®.

She has a BA in English language and literature from Rutgers University. You can connect with Julia on 

 (CKD) has seen progress in the areas in which genomes can inform treatment. A review published in 

Current Opinion in Nephrology and Hypertension

 found that genomic testing could be applied in the treatment of CKD.

The first area that genomic testing can be valuable in CKD care is in the understanding of which genes are associated with CKD or its phenotypes. This sector has expanded in recent years, and there is potential for each new gene discovered to work toward diagnosing a monogenic cause for CKD. Pathogenic variants in mtDNA causing a Gitelman-like syndrome brings together understanding and the identification of biallelic variants.

The identification of biallelic variants that are related to hypokalemic syndrome can fortify tubular potassium channel understanding and further link to extrarenal phenotypes. De novo heterozygous variant discovery can bring hypokalemic and hypomagnesemic kidney syndromes with dilated cardiomyopathy together.

Iterative progress continues in heritable structural kidney disorders. There are some challenges to whether the genetic variation in these genes relates to heritable phenotypes. Evidence for biallelic pathogenic 

 has emerged to suggest there is a causative relationship in various glomerular phenotypes, including nonsyndromic nephrotic syndromes and syndromic complex kidney phenotypes.

 have been identified resulting in mixed glomerular and tubulointerstitial kidney disease; 

 has been identified as linking disease entities with hepatic, kidney, and cardiac components. These gene relationships are helping to identify kidney ciliopathies.

Clinical effects of genomic testing for CKD have also been revealed through studies. A cohort of autosomal dominant tubulointerstitial kidney disease (ADTKD) families found that 29 of 45 achieved a genetic diagnosis through the genes known to be associated with the condition, although 9 of the 45 had diagnostic variants in genes not usually associated with ADTKD.

Researchers will have to collect and analyze cohorts of monogenic kidney disorders to further learn about prognostication factors. This includes in areas of broad genomic testing, which will need to be tested to determine whether it can have a diagnostic role in unexplained CKD or kidney failure.

Exome analysis in a retrospective study found that a broad kidney gene panel found new genetic diagnoses and could have a role in a diagnostic approach. Diagnosable phenocopy disorders could also be more common in genetic diagnosing. Broadened gene panels for complex phenotypes will be needed, as targeted gene panels fail to identify a genetic diagnosis in up to 20% of instances.

Understanding clinical utility for genomic testing is becoming the focus of further research, as there are less than 10 genes that account for many diagnoses made. A way that genomic testing could be applied is by replacing or acting synergistically with a kidney biopsy in certain situations, as some situations could avoid kidney biopsy altogether in favor of genomic testing. Genomic testing in conjunction with a kidney biopsy changes treatment in 1 of 4 patients who receive a genetic diagnosis.

Kidney donor assessment and reproductive planning could also be realizable goals for genomic testing clinical applicability. Key factors that indicate a higher likelihood of a monogenic cause of CKD include making clinical utility clearer. These factors could include the presence of a family history, younger age of onset, extrarenal features, and phenotype-specific factors.

Translating evidence into practice for integration into nephrology practice is the next step for genomic testing. A way that this can be implemented is in clinicians refining prevalence estimates and characterizing rarer subtypes to create revised and condition-specific diagnostic standards around genetic testing.

Digital health approaches to case identification, transcriptomic or RNA sequencing, and globally calibrated and verified gene-phenotype curation for monogenic CKD could be future innovations in genomic testing being applied to CKD.

The author concluded that the benefits of genomic testing and who it can benefit are becoming clearer and more likely to see positive effects than at any other point in history.

Mallett AJ. Which patients with CKD will benefit from genomic sequencing? synthesizing progress to illuminate the future. 

. Published online September 8, 2022. doi: 0.1097/MNH.0000000000000836

Genomic testing can benefit patients with chronic kidney disease (CKD) as more causative genes are identified and evidence for clinical utility is discovered.

Genomic Testing Could Be More Beneficial for Patients With CKD

Hayden is an assistant editor for The American Journal of Managed Care® (AJMC®) and joined AJMC® in 2021, where she produces written and video content covering multiple disease states.

She has a BA in journalism & media studies from Rutgers University. You can connect with Hayden on 

Approximately 8.4 million people around the world lived with 

 (T1D) in 2021, and this number is predicted to rise to 17.4 million by 2040, according to a modelling study published in 

The study was conducted by researchers from the United States, Canada, Australia, and Luxembourg. These researchers also estimated around 3.1 million individuals with T1D would have been alive in 2021 if they had not died prematurely as a direct result of poor T1D care, and that an additional 700,000 individuals would still be alive if they had not died due to a lack of diagnosis.

 these findings have been entered into an open source database for the T1D Index Project, which was launched by the non-profit Juvenile Diabetes Research Foundation (JDRF) this month and shows how many people live with T1D around the world and what actions can be made to reduce its effects. The study was funded by JDRF.

The researchers set a discrete-time illness-death model (Markov model) to data on T1D incidence and associated mortality to estimate T1D incidence, prevalence, association mortality, and life expectancy in 201 countries.

Incidence and mortality data were available from 97 and 37 countries, respectively, and data from an expert survey were used to estimate T1D diagnosis rates. Random-forest regression of published T1D mortality data was used to model estimated mortality, and life expectancy was calculated using life tables.

These estimates were validated against observed prevalence data from 15 countries.

The authors found between 8.1 and 8.8 million people lived with T1D globally in 2021.

Of this group, 1.5 million (18%) were aged younger than 20 years, 5.4 million (64%) were aged between 20 and 59 years, and 1.6 million (19%) were aged 60 and older.

“There is a systemic trend towards other published estimates having lower paediatric prevalence and higher adult prevalence than in our model,” the authors noted.

In 2021, half a million new cases of T1D were diagnosed, with a median age of onset of 39 years. Further, roughly 35,000 individuals who did not receive a T1D diagnosis died within 12 months of symptom onset.

“The burden of type 1 diabetes in 2021 is vast and is expected to increase rapidly, especially in resource-limited countries,” the authors said, noting 1.8 million, or one-fifth, of individuals living with T1D globally in 2021 lived in low-income or lower–middle-income countries.

Additionally, the mean remaining life expectancy for a 10-year-old diagnosed with T1D in 2021 ranged from 13 years in low-income countries to 65 years in high-income countries.

In 2040, researchers predict between 13.5 and 17.4 million prevalent type 1 diabetes (T1D) cases, reflecting a 60% to 107% increase in global cases compared with 2021.

The researchers also estimated 3.7 million missing prevalent cases of T1D in 2021.

“The substantial missing prevalence highlights the premature mortality of type 1 diabetes and an opportunity to save and extend lives of people with type 1 diabetes,” the authors said. “Our new model, which will be made publicly available as the Type 1 Diabetes Index model, will be an important tool to support health delivery, advocacy, and funding decisions for type 1 diabetes.”

Gregory GA, Robinson TIG, Linklater SE, et al. Global incidence, prevalence, and mortality of type 1 diabetes in 2021 with projection to 2040: a modelling study. 

. 2022;S2213-8587(22)00218-2. doi:10.1016/S2213-8587(22)00218-2

In 2040, researchers predict between 13.5 and 17.4 million type 1 diabetes (T1D) cases globally, reflecting a 60% to 107% increase in cases compared with 2021.

Number of T1D Cases Expected to Double Worldwide by 2040

Rose is a freelance writer for The American Journal of Managed Care® (AJMC®), where she previously worked as an editor.

She has a BA in journalism & media studies and Spanish from Rutgers University. You can connect with Rose on 

details a case of intrahepatic sarcomatoid 

 (s-CCC), a very rare malignancy of the hepatobiliary system, in a 32-year-old man who is the youngest reported patient with s-CCC. The 

 aims to provide insight into the diagnosis and treatment of the condition, as well as raise awareness to facilitate accurate diagnosis of s-CCC versus other hepatobiliary cancers.

A subtype of intrahepatic cholangiocarcinoma, s-CCC comprises less than 1% of hepatobiliary cancers overall. While its pathogenesis is not well understood, s-CCC can affect various organs, including the urinary tract, uterus, thyroid, breast, skin, pancreas, lung, upper digestive tract, and gall bladder. It is easily confused for hepatocellular carcinoma (HCC) and other liver malignancies, and the most common symptoms are nonspecific, such as fever and abdominal pain. Accurate diagnosis of s-CCC requires immunohistochemical staining to differentiate it from other liver cancers.

The highest risk group for s-CCC mainly encompasses patients older than 40 years, and the case report of a 32-year-old individual represents the youngest recorded s-CCC patient thus far. The patient presented with occasional pain in the upper abdomen and nausea at night, but without other symptoms such as fever or chills. He was seen at a different hospital and found to have an occupancy in segment 5 of his liver 3 days prior. He had a history of chronic hepatitis B spanning more than 20 years and had undergone entecavir treatment, but did not have any notable family history.

A physical examination was uneventful, and alanine aminotransferase (ALT), serum carcinoembryonic antigen (CEA), alpha-fetoprotein (AFP), serum total bilirubin, and serum aspartate aminotransferase (AST) were all within normal ranges based on initial lab results. Abnormalities in common serological markers, including CEA and AFP, were previously thought to distinguish s-CCC, but this case and several other studies suggest that these markers are not reliable. CT scans showed a hypodense mass in segment 5 of the patient’s liver, and MRI scans showed a similarly sized mass.

The patient underwent a laparoscopic segmentectomy of segment 5 and cholecystectomy. Recovery was smooth with no bleeding events or biliary fistula, and the patient was discharged after 8 days. Histology reports identified a primary high-grade malignant tumor that showed patchy necrosis and abundant lymphocyte infiltration, but no infiltration into nerves, vessels, or the margin of the hepatectomy.

“Immunohistochemical examinations further showed positive staining for vimentin, CK19, CK7, CD34 (vessels), CD31 (vessels) and PD-L1 while results for AFP, Glypican-3, CK20, PD-L1 and HepPar-1 were negative,” the authors wrote. “The latter, as a marker of hepatocytes, helps to distinguish cholangiocarcinoma and metastatic carcinoma in the liver from HCC and as such, it is of diagnostic value.”

With the s-CCC diagnosis confirmed, the patient was started on adjuvant therapy with albumin-paclitaxel in combination with gemcitabine for 8 cycles. At 17 months post-surgery, there was no recurrence.

Relevant case reports and series were also reviewed by the authors to gain insight into common characteristics of s-CCC, and 76 cases were identified in PubMed. Most patients in the dataset reported their main complaints, and the most common was abdominal pain. This was more common than fever and weight loss. In immunohistochemical analyses, HepPar-1 and AFP were found to be useful diagnostic markers based on data from 50 patients.

“Electron microscopy is also used to diagnose neoplasms of s-CCC and in this case, irrespective of their hepatocyte origin, the tumors are characterized by the presence of microvilli and basement membranes,” the authors wrote. “Hence, based on results from electron microscopy, immunohistochemistry as well as histological examinations, sarcomatoid cholangiocarcinoma can be accurately diagnosed.”

Tumor treatment data was available for 74 patients, 35 (47.3%) of whom underwent surgical intervention. Radiotherapy or chemotherapy was given in 15 (20.3%) cases, and 8 patients (10.8%) received supportive treatment or palliative care. Five patients (6.8%) had surgery plus chemotherapy or radiotherapy, 2 (2.7%) had transcatheter arterial embolization, 1 (1.3%) underwent viscum album treatment, and 1 (1.3%) had transcatheter arterial infusion chemotherapy and surgical treatment. Seven patients (9.5%) were untreated. Of 73 patients with follow-up data available, 44 (60.3%) experienced disease progression leading to death, and 15 (20.5%) survived. Disease recurred in 12 patients (16.4%) and 2 patients (2.7%) were lost to follow-up.

Overall, the report stresses a need for established guidelines in this rare disease, as well as further research on the effectiveness of chemotherapy or radiation therapy for these patients. The progression of s-CCC is still unclear, and surgical resection with or without adjuvant chemotherapy remains the standard treatment route.

Xi LF, Jin Y, Li JT. Intrahepatic sarcomatoid cholangiocarcinoma: A case report of the youngest patient on record and a review of the condition's characteristics. 

. Published online September 1, 2022. doi:10.3389/fsurg.2022.963952

The rare condition can easily be confused with hepatocellular carcinoma, but immunohistochemical studies can help accurately diagnose intrahepatic sarcomatoid cholangiocarcinoma.



Case Report Describes Youngest Recorded Patient With Intrahepatic Sarcomatoid Cholangiocarcinoma

Metabolic syndrome (MetS) is a disease that is diagnosed in those who have metabolic abnormalities, such as hypertension and abdominal obesity. Short and long 

 duration are known predictors of adverse medical outcomes.

 found that sleep duration and insomnia had an effect on the current and future risk of MetS in postmenopausal women.

Data from the Women’s Health Initiative (WHI), a prospective study of postmenopausal women aged 50 to 79 years, was used for this study. All women reported their own sleep duration, from 6 or fewer hours per night to  10 or more hours per night. The WHI Insomnia Rating Score was also used to determine how often the participants had trouble falling asleep; if they woke up several times a night, woke up earlier than planned, or had trouble getting back to sleep; and how restful sleep was in the past 4 weeks.

Age, race, education level, marital status, and chronic disease presence were collected from the group. All participants were also asked if they used any medication or alcohol at night to help sleep. Waist circumference and body mass index (BMI) were taken for each participant. Participants were excluded if they had a history of diabetes or were missing baseline information.

There were 5159 participants with sleep duration data that were included in the study, of which 5063 had data on insomnia. Women with MetS were more likely to have a higher BMI, depression, low alcohol consumption, low levels of physical activity, longer sleep hours, insomnia, and more frequent use of sleep medication.

Positive associations were found between the following:

Sleep duration of 8 to less than 9 hours with a waist circumference greater than 88 cm (odds ratio [OR], 1.18; 95% CI, 1.01-1.40) and triglycerides (TG) of 150 mg/dL or higher (OR, 1.23; 95% CI, 1.05-1.46)

Sleep duration of 9 or more hours with MetS (OR, 1.51; 95% CI, 1.12-2.04), waist circumference greater than 88 cm (OR, 1.40; 95% CI, 1.04-1.90), and TG of 150 mg/dL or more (OR, 1.42; 95% CI, 1.04-1.92).

There was a borderline positive association between insomnia and MetS (OR, 1.14; 95% CI, 0.99-1.31) and a positive association with waist circumference greater than 88 cm (OR, 1.18; 95% CI, 1.03-1.34) and fasting glucose (FG) of 100 mg/dL and higher (OR, 1.17; 95% CI, 1.02-1.35).

There was a positive association between sleep duration of 9 or more hours and MetS in both strata of insomnia (insomnia, OR, 2.89; 95% CI, 1.39-6.01; no insomnia, OR, 1.54; 95% CI, 1.03-2.00 in each strata, respectively), while women without insomnia had a positive association between sleep duration of 9 or more hours and waist circumference above 88 cm and TG of 150 mg/dL or higher (OR, 1.42; 95% CI, 1.02-1.98; and OR, 1.47; 95% CI, 1.04-2.03, respectively).

Short sleep duration of 6 to less than 7 hours and insomnia were associated with a waist circumference above 88 cm (OR, 1.31; 95% CI, 1.06-1.61). The odds of having FG of 100 mg/dL and above was higher in those without insomnia and less than 6 hours of sleep duration (OR, 1.38; 95% CI, 1.00-1.90) and for those with insomnia and 7 to less than 8 hours of sleep (OR, 1.36; 95% CI, 1.05-1.76).

There were some limitations to this study. The group of women in the WHI may not represent all postmenopausal women in the general population, and  data were only available data for a portion of the subjects in the study, which limits the power of the analysis. Sleep duration was also self-reported and is therefore subject to misclassification.

The researchers concluded that current and future risks of MetS were linked to sleep duration in postmenopausal women, which highlights the importance of healthy sleep duration.

Peila R, Xue X, Cespedes Feliciano EM, et al. Association of sleep duration and insomnia with metabolic syndrome and its components in the Women’s Health Initiative. 

. 2022;22:228. doi:10.1186/s12902-022-01138-9

A recent study used longitudinal data to investigate current and future risks of metabolic syndrome and its potential links with sleep duration and insomnia.

Metabolic Syndrome Associated With Sleep Duration, Insomnia

Matthew is an associate editor for The American Journal of Managed Care® (AJMC®). He joined AJMC® in 2019 and creates content for 

, a 24-hour online program developed MJH Life Sciences® focusing on pressing topics within managed care, as well as the nonwork-related activities of health care stakeholders.

He has a BA in journalism & media studies and economics from Rutgers University. You can connect with Matthew on 

A recent review shows that adverse events are common in clinical trials investigating biologic therapies for the treatment of chronic rhinosinusitis with 

 (CRSwNP), but further research is needed to address potential study limitations. Results were published in the 

American Journal of Otolaryngology–Head and Neck Medicine and Surgery

As a chronic inflammatory condition that affects the nose and paranasal sinuses, CRSwNP is associated with a significant impact on health-related quality of life (QOL). Biologics have proved effective in the management of the condition, with a generally better safety profile compared with other treatment modalities such as 

, but adverse events have been reported nonetheless.

“The management of CRSwNP is challenging due to disease recurrence and adverse effects. Although adverse events are not as common with these management modalities [biologics] as with the previous ones, they still exist and might constitute a burden that might impact the QOL of the treated patients,” the study authors wrote. “​​Some studies have reported that adverse events were common with [biologics]. However they were not specific and self-limited.”

Seeking to further assess safety and adverse events associated with different biological therapies for the management CRSwNP, they conducted a comprehensive systematic review of 13 studies, including 12 randomized controlled trials (RCTs) and one cross-sectional study, of which 6 were for dupilumab, 3 for omalizumab, 3 for mepolizumab, and only 1 investigated reslizumab. A total of 2282 patients with CRSwNP were included in the systematic review.


Overall, headaches, injection site reactions, and pharyngitis were the most common adverse events found in the investigated studies. Incidence of specific adverse events were cited for each biologic:

Dupilumab: pharyngitis was reported in 225 patients (22.4%), followed by erythema and allergy in 95 patients (9.4%), headache in 82 patients (8.1%), epistaxis in 52 patients (5.1%), and asthma in 18 patients (1.7%)

Omalizumab: headache, nasopharyngitis, and injection-site reactions were reported to be the most common adverse events, with estimated prevalence rates of 8.1%, 5.9%, and 5.2%, respectively

Mepolizumab and reslizumab: studies reported that 40% of patients were complicated by nasal polyps/congestion/pharyngitis/infections, 14 had a headache (15.5%), 2 developed asthma (2.2%), and only 1 patient (1.1%) had epistaxis as an adverse event


Researchers acknowledged that the review might be limited by the small number of included studies as some are based on data from previous investigations which added no actual value to the intended outcomes. The small sample size in some studies was also cited as a limitation of the study findings.


“Although the literature's current investigations indicate the safety of the biologic treatment modalities, further studies are needed as some uncertainty among the trials have been reported,” concluded researchers.


Aldajani A, Alroqi A, Alromaih S, Aloulah MO, Alsaleh S. Adverse events of biological therapy in chronic rhinosinusitis with nasal polyps: a systematic review. 

. 2022;43(6):103615. doi:10.1016/j.amjoto.2022.103615

Headaches, injection site reactions, and pharyngitis were the most common adverse events associated with the biologic therapies dupilumab, omalizumab, mepolizumab, and reslizumab in the treatment of chronic rhinosinusitis (CRS) with nasal polyps.

Examining Biologic-Related Adverse Events in CRS With Nasal Polyps

 since its inception in 2010. He brings a wealth of clinical and technical expertise associated with consumer-patient engagement and provider practice operations. Gary drives corporate strategy, product innovation, and direction toward one common objective: to enable providers to successfully engage and empower their patients to attain positive outcomes. Over the years, Gary's work has led to the evolution of InteliChart's 

 into a full platform of engagement solutions that address automated patient scheduling, appointment reminders, digital intake, telehealth, patient feedback, and population health initiatives. Prior to InteliChart, Gary held leadership positions with Integrated Healthcare Solutions and Atlantic Healthcare Management.

The business of health care has changed dramatically over the last 2 decades. For patients, the shift to higher-deductible plans has necessitated they take a more active role in their care—and they’re looking to their health care providers for 

 to facilitate this new role. For health care organizations, the shift to value-based care comes with payer expectations of better health care outcomes and the rewards and penalties associated with specific metrics and performance.

The trends of patient-as-consumer and value-based care have been ongoing for some time and will continue to merge into the future. A consequence of these trends is our challenge of communicating about them in a way that is universally understood.

With the goal of improving the patient experience and health outcomes, health care organizations must align on the meanings of patient engagement and active patients. The 2 concepts go hand in hand and are crucial to communicating about the link between patient engagement, active patients, and how the concepts work together to achieve health care’s 

 concluded that “patient engagement is both process and behavior and is shaped by the relationship between the patient and provider and the environment in which health care delivery takes place.”

Over the last decade, we’ve continued to understand and refine what it means to truly engage patients. Today, we can narrow that definition even further to include these learnings, which would look something like this: Patient engagement is an established communication pathway that connects patients to their providers with the goal of streamlining care and creating better health outcomes.

The key phrase in the definition proposed above is 

 because it focuses on the exchange of information. It’s this 2-way exchange that is the basis for the relationship with the provider and empowers patients to have more control over their care.

It is also the exchange of information where the patient-as-consumer trend comes into play. Patients expect their health care providers to use modern, convenient communication pathways and tools such as patient portals and online scheduling.

As value-based care initiatives evolve and population health comes to the forefront, we’re hearing more about active patients.

 defines an active patient as someone who “participates as a partner in their health care… They don’t make health care decisions on their own, but they’re in charge of the process. They schedule appropriate visits… (and) follow through on treatments and lifestyle changes.”

As with patient engagement, we can refine this definition even further based on our observations over the last few years to: An active patient is someone who uses technology to proactively manage their care, leading to better health and a higher quality of life.

Without technology, the effort required to be an active patient in today’s world can become a barrier to care. Following up on referrals, managing medication refills, and scheduling appointments are labor intensive and frustrating without digital tools.

Put simply, patient engagement technology is the key to active patients. When patients are constantly engaged, they lay the groundwork for better health outcomes and providers realize value-based care advantages.

Using patient engagement to create an active patient

Access to patient engagement tools increases the likelihood that patients will take the initiative in their continued care. Fortunately, today’s health care organizations have many patient engagement tools to choose from, and more will be available in the future.

A good foundation of patient engagement technology includes:

By giving patients direct access to their health records and history, they have transparent access to the information they need to participate in their care while achieving better outcomes.

 Simplified intake solutions enable patients to check in and complete forms anywhere, anytime. This allows for a seamless check-in process while avoiding long waits, making a follow-up visit more attractive to busy patients.

 Digital technology allows patients to conveniently secure a doctor’s appointment 24/7 at their convenience—at home, in between meetings at work, or while running errands—as well as schedule needed follow-ups for post visitations.

To err is human, and in today’s busy lifestyle, patients will often miss an appointment or fail to fill prescriptions. A platform that can automate pre- and postvisit communication can help patients stay on top of their care and remain engaged.

Feedback on care, effective treatment, and process evaluation helps improve operations and further engagement, providing an opportunity to enhance a patient’s experience and empower them to express opinions.

Patient engagement, active patients, and the Quadruple Aim

Technology is the key to patient engagement, active patients, and realizing the promise of the Quadruple Aim. Sustained engagement with patients will ultimately be the catalyst for successful value-based care, and health care organizations have all the necessary tools at their disposal.

When health care agrees on standard definitions of patient engagement and active patients, communicating about moving forward with initiatives that benefit patients, providers, and the industry as a whole will be easier for everyone.



As health care shifts reimbursement models from fee-for-service to value-based care, new terms and phrases have been surfacing across the industry. Two of the terms emerging with increased usage are “patient engagement” and an “active patient.” But what do they mean? And why are they important? 


Contributor: The Role of Patient Engagement in Creating Active Patients 

 Our JAK inhibitors have shown the most promise. Ruxolitinib cream 1.5% twice a day has gone through 2 phase 3 studies. The PDUFA [Prescription Drug User Fee Act] date is July 18, 2022. The studies show that about half the patients at a year will get 75% or more of their pigment back on the face, and about half the patients at the year mark will get 50% or more of the pigment back on the whole body. That’s what the data are showing for ruxolitinib cream. In terms of safety, it looks promising. It’s already approved for atopic dermatitis as of September 2021. We see about a 6% rate of acne and a 6% rate of application site reaction, itch, or redness, but it generally doesn’t burn or sting. That’s a very promising treatment for patients with vitiligo.

When we look at the subgroup analysis, we see that it doesn’t matter whether patients have had vitiligo for more than 50 years or for a short time. It works across age, gender, and race. We see somewhat similar responses across all those different subgroups. That’s also what we see from the data from ruxolitinib cream. When we look at anatomic regions, the head and neck does the best, trunk and extremities after that, and the acral sites are the least responsive. Nevertheless, we still see a significant benefit of the hands and feet with ruxolitinib cream compared with vehicle.

In terms of some of the other JAK inhibitors in development, ritlecitinib, Pfizer’s JAK3 inhibitor, has completed a phase 2 trial. This study was designed a little differently. It included only patients who had active, progressive vitiligo. About 12% of patients achieved 75% or more repigmentation at the 6-month mark on the highest dose of the medication. We view both an oral and a topical as necessary because an oral might be better for patients who have a large body surface area. The ruxolitinib cream limited the body surface area to 10% or less. With patients who are progressive in nature and getting new spots, it’s hard to keep chasing that with a cream. An oral agent would make more sense, just like using phototherapy. That’s the way we view it. There’s room for both topicals and oral JAK inhibitors, and both will be important to help patients out.

 One thing we’ve left out of the conversation is that it isn’t coincidental that we’re talking about JAK inhibitors. This is very deliberate. With JAK inhibitors, the autoimmune [system], the mechanism of disease, the mechanism by which T cells or immune cells attack and destroy the melanocytes, or the color cells, in the skin seems very much to be mediated by a cytokine or a chemical messenger in the body, the messaging of which can be disrupted with a JAK inhibitor. It’s important for everybody to know that this isn’t another case of simply throwing a JAK inhibitor at an autoimmune problem. We have a lot of data to support that this is the right path for this disease.

 It makes a lot of sense mechanistically. Our typical immunosuppressants don’t work so well on the particular arm in the immune system that’s too active in vitiligo. JAK inhibitors do, and that’s why it’s a good fit to use these medications for patients with vitiligo. It’s targeting the particular aspect that’s a problem for patients with vitiligo.

 I heard data from phase 2 that only 12% of the patients achieved.

 That was for ritlecitinib at the highest dose at 6 months. Twelve percent of patients achieved an F-VASI [Face Vitiligo Area Scoring Index] 75 in that study, with the caveat that it wasn’t designed exactly the same as the ruxolitinib cream study that Incyte ran.

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Dr Rosmarin illustrates treatment management of vitiligo with the use of JAK inhibitors.

Role of JAK Inhibitors in Treatment of Vitiligo

 How would you define the unmet need, given what we have and this disease state?

 There’s a great unmet need for patients right now. There are no FDA-approved treatments for a reason. It’s a hard disease to treat. Part of the reason is that it takes only an overactive immune system to destroy the pigment cells and cause the disease, but to treat a patient or to get the pigment back, we often view it as a 2-step process. One is telling the immune system to calm down so the environment is more hospitable. But also those pigment cells have to migrate back into those depigmented white patches. Those are some of the big challenges. It isn’t enough sometimes to tell the immune system to calm down. You need that second step, which is what light treatment can often do. Or you wait with time, and it can naturally progress on its own.

Some of the unmet needs are having a treatment that works rapidly, effectively, safely, and conveniently. There are those main areas that we can improve on in all aspects. Some of our treatments with phototherapy don’t work for everybody. Calcineurin inhibitors certainly don’t work for everybody, nor do corticosteroids. It takes a long time for patients to repigment. It isn’t a several-week process, as Dr King said. It takes months. We need to give it time. The rapidity is important.

The ultimate efficacy and the safety matter. Some of our treatments, such as oral corticosteroids or topical corticosteroids, can have long-term effects. Oral JAK inhibitors can have their adverse effects as well. We need to take that into consideration. We’re lacking tools to adequately measure changes that are meaningful to patients. I wish we had better tools. Dr Epstein, I have a question based on what you said. The primary end point for a lot of these vitiligo studies is the face. The secondary end points are the whole body. Do you think that end point is going to affect the way payers view coverage of these new vitiligo treatments?

 I don’t think there’s a definite yes or no answer to that. It’s going to depend on what the data actually look like, and then how the KOLs [key opinion leaders] are picking this up and converting it into the real world, because the secondary end points are typically less important to the payers than the primary end points. That’s an unanswered question right now.

 I’ll build on that. Personally, I don’t know if it matters if somebody is a primary or secondary by definition. If they’re clinically relevant and they’re powered appropriately, the data are good. The data will help. I still think maybe [we should look at] the policies. Some of the discussion we’ve had to this point is that if there are data on the trunk, then we have to look at that. If the policy is too dated, is it because we don’t have data there or because we’re antiquatedly thinking that we can cover that up by somebody wearing a shirt and they can’t cover the face?

The panel navigates unmet needs surrounding the vitiligo treatment landscape.

Unmet Needs in Vitiligo Treatment Landscape 

Mary is the associate editorial director for The American Journal of Managed Care® (AJMC®), The Center for Biosimilars®, and Evidence-Based Oncology™. She joined AJMC® in 2013 and oversees speaker recruitment and panel preparations for AJMC®'s premier annual oncology meeting, Patient-Centered Oncology Care®.

She has a BA in communications and philosophy from Loyola University New Orleans. You can connect with Mary on 

According to American Association for Cancer Research (AACR), the past year has brought plenty of good news: 8 new anticancer therapies, 10 new uses for existing drugs, and 2 new diagnostic imaging agents. More people than ever in the United States are living after being treated for cancer—18 million. The rate of cancer mortality continues to fall, tumbling 2.3% between 2016 and 2019.

Yet, as noted in AACR’s annual Cancer Progress Report, cancer remains a top killer, claiming more than 600,000 lives each year in the United States. Disparities in who gets cancer—and who gets access to the best care—remain “a pervasive public health problem,” according to the report released Wednesday, which covered data from August 1, 2021, to July 31, 2022.

This year’s report came with a new warning: the Supreme Court decision and subsequent actions by states to restrict reproductive rights will have “serious detrimental effects” on health care that could affect patients with cancer. A statement released with the report warns that cancer treatments could be withheld if they might affect a pregnancy, causing disease to progress, “making it more difficult to treat and more likely to threaten the life of the woman.”

Failure to prevent cancer or ensure that equitable treatment exacts a toll, both in human and economic terms, the report states. Direct medical costs for cancer care in the United States “were estimated to be $183 billion in 2015, the last year for which these data are currently available; this cost is projected to increase to $246 billion by 2030.”

Despite all the advances in treating cancer, AACR said the need to prevent disease is urgent, as the cancer burden will rise with an aging population. There’s been tremendous progress in reducing smoking and increasing breast cancer screening, but there are troubling signs: uptake of vaping by teens and suboptimal rates of lung cancer screening.

Based on current trends, the report states, the number of new cancer cases each year will reach 2.3 million by 2040, with 80% occurring among those 55 or older. The report highlights the vulnerability of those living HIV if they develop cancer as they age. More than half (57%) will occur among those at least age 65, and this segment of the population will grow from 54.1 million in 2019 to 81 million in 2040, according to the report.

Support for research and regulatory activity.

 Overall, the report connects the long-term, bipartisan Congressional investment in cancer research with the remarkable advances in treatments and improved outcomes. AACR leaders call for continued funding for basic research, not only to develop therapeutics but also to expand use of artificial intelligence (AI) in cancer detection, and to do more to understand the physical, psychosocial, and financial effects of cancer on survivors. AACR called on Congress to consider tax policies that encourage philanthropic support for cancer groups.

“Basic research discoveries have driven the remarkable advances that we’ve seen in cancer medicine in recent years,” AACR President Lisa M. Coussens, PhD, FAACR, said in the report. “Targeted therapies, immunotherapy, and other new therapeutic approaches being applied clinically all stem from fundamental discoveries in basic science. Investment in cancer science, as well as support for science education at all levels, is absolutely essential to drive the next wave of discoveries and accelerate progress.”

Among the therapeutic advances AACR highlighted:

FDA approval of belzutifan for cancers associated with von Hippel-Lindau disease;

FDA approval for a new immune checkpoint inhibitor, relatlimab-rmbw, to treat melanoma;

FDA approval of asciminib, an inhibitor of the BCR/ABL oncogene to treat chronic myelogenous leukemia;

FDA approval of zanubrutinib, which inhibits an enzyme necessary for proliferation of B cells, to treat Waldenström macroglobulinemia and marginal zone lymphoma.

In a “Call to Action” section, AACR praised the relaunch of the Cancer Moonshot and sought specific appropriations in number of areas, including reauthorization of the Childhood Cancer STAR Act ($30 million), Childhood Cancer Data Initiative ($50 million), CDC Division of Cancer Prevention and Control ($462.6 million), and FDA’s critical regulatory science efforts, increase of $318 million ($3.653 billion total).

 The report notes that overall progress in survival is uneven, and some types of cancer are on the rise, especially those that appear to be related to obesity such as kidney, pancreatic, and uterine cancer; fatty tissue in women who are overweight is known to release estrogen that can increase the risk of uterine cancer. Between 2000 and 2018, the report states, the greatest increased incidence in pancreatic cancer was seen among women aged 15 to 34 years. Cases of colorectal cancer among young adults are also on the rise.

Cancer disparities are sharp between certain US populations, “including racial and ethnic minorities and several other medically underserved groups, [who] have not benefited equally from the advances against cancer,” the report states. Social determinants of health, such as lack of housing, income differences, lack of education, and inadequate or lack of health coverage all serve as barriers to receiving the best available care. For example, AACR called for reducing barriers for children on Medicaid by ensuring they can see an out-of-state pediatric specialist.

The report also highlighted passage of laws to improve diversity in clinical trials, including the DIVERSE Act to improve enrollment of minority populations in clinical trials, and the DEPICT Act, which requires FDA to issue rules for drug sponsors to meet enrollment targets that match the population of the disease the therapy will meet.

AACR’s report concludes with an overview of the work ahead. “Despite the major progress that is being made against cancer…there are several areas in cancer research and patient care that need to be addressed in order to provide opportunities for further advances,” the report states.

“Racial and ethnic minorities and medically underserved population groups in the United States continue to shoulder a disproportionate burden of cancer. The epidemic of obesity in US adults and youth, and that of e-cigarette use in the US youth, continue to threaten the progress made against cancer. Awareness of and adherence to routine cancer screening continue to be suboptimal. Participation and diversity in clinical trials that are reflective of the US cancer burden continue to be minimal.

“Financial burden of a cancer diagnosis on those directly affected by it, as well as on the US economy, continues to be substantial. And while cancer screening and clinical trials—both of which were severely impacted by COVID-19—are returning to prepandemic levels, the full impact of the pandemic on cancer research and patient care remains to be seen.”

The annual report notes that progress in reducing cancer mortality is uneven among populations, with minority groups not seeing the same benefits from therapeutic advances. Cancers related to obesity are also on the rise. 