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Results of the Pinpoint Project

Results of the Pinpoint Project

The Pinpoint web app was created and evaluated by Klein Buendel in collaboration with HPC International through a grant funded by the National Institute on Minority Health and Health Disparities (MD010746; Dr. Valerie Myers, Principal Investigator). Designed for adolescents aged 13-17, the Pinpoint web app provides education on communication strategies and sickle cell disease (SCD) care management. Pinpoint includes a pain assessment tool, vocabulary game, body scanner reflection, and educational self-disclosure activity. It was developed as an interactive gaming web app for use on smartphones, tablets, and desktop computers. Learning Buddies were added to act as a guide for the teen in the app to explain each activity and feature with text and voiceover. There are two Learning Buddy characters to choose from, each of whom had their own fictional story about living with SCD. Learning Buddies are customizable, allowing teen participants to choose clothing, hair style, and skin tone upon registering for the app. For each activity the teens participate in, points can be earned to unlock additional customization options, including hats, jewelry, and more hairstyles and clothing options. A Self-Disclosure Stories section was also added to the web app. This consists of stories from real people, including children, young adults, and older adults living with SCD.

The fully developed app was used to interview clinicians to evaluate content and clinical meaningfulness (n=10). Additionally, adolescents (n=11), aged 13-17, with SCD participated in usability testing to evaluate the user interface, ease of use, and perceived barriers. Both clinicians and teens participating in the usability study were encouraged to go through the app on their own while sharing their screen and describing aloud their thoughts and impressions of the app. They were then guided to specific parts of the app (such as the vocabulary game, self-disclosure activity, Pain Assessment Tool, Body Scanner Reflection, and Learning Buddies) to review.

Overall, clinicians believed the app content was meaningful and engaging, would help their patients better identify SCD pain and would help them better treat their patients’ pain. Clinicians also said they would encourage SCD patients to use the app. Teen participants in the usability testing found the app to be easy to use and understand. They enjoyed the interactivity of the games, found the Learning Buddy to be interesting and relatable, and liked that they could share the information recorded on the pain assessment tool with caregivers and healthcare providers by text or email.

In a subsequent randomized, stepped-wedge trial, the app was tested with 13–17-year-olds with SCD and one of their parents to evaluate changes in knowledge acquisition for communicating about pain. Community-based recruitment strategies were used. This involved attending SCD conferences, creating relationships with community-based organizations (such as sickle cell associations, sickle cell camps, libraries, Boys and Girls clubs, YMCAs, and clinics), online recruitment (such as Facebook/Reddit ads and posting in SCD-specific groups on Facebook/Reddit), partnering with companies that specialize in recruiting for SCD research, and snowball recruitment. Through these efforts, 24 teen/parent dyads were successfully recruited and randomly assigned to study group.

Both teens and their parent took a survey every 4 weeks for 12-16 weeks and used the app for 4-12 weeks, depending on which arm of the study they were assigned. Parents and teens randomized into Arms 1-3 took surveys every 4 weeks for 12 weeks and downloaded the Pinpoint app at Baseline (Arm 1; used the app for 12 weeks), 4 Weeks (Arm 2; used the app for 8 weeks), or 8 Weeks (Arm 3; used the app for 4 weeks), while participants in Arm 4 took surveys every 4 weeks for 16 weeks and downloaded the Pinpoint app at 12 Weeks (used the app for 4 weeks). Surveys were completed during a virtual check-in via Zoom with a member of the study staff. There was 100% retention of both parents and adolescents throughout the intervention for follow-up surveys.

Adolescents reported on pain interference, peer relationships, physical stress experiences, psychological stress experiences, pain behavior, pain quality, experiences with providers, family relationships, communication, and personal experiences with the SCD. Parents were assessed on disease knowledge, family relationships, family communication, and their experiences managing their child’s SCD. The adolescents were 92% African American, 8% Hispanic, 54% male, and the mean age was 14.8. SCD was not a new disease for any of the participants. The parents were 93% African American, 4% Hispanic, 92% female, and the mean age was 44.9. The small sample size prohibits the investigators from evaluating changes between groups, though summary statistics at each time point were created and reviewed.

In the final surveys, adolescents also reported on the usability of the web app:

At the baseline and the final survey time points, adolescents reported on communication and SCD pain management:

Lastly, web app usage data was collected. From the 24 adolescents randomized, 34 pain reports were entered by 16 unique users (67%) within the app. Of those pain reports recorded, 20 (59%) were shared with their parent or health care provider via the app.

Pinpoint is available to individuals and medical providers. To learn more about the Pinpoint app, check out the video tutorial or visit HPC International.

KB and HPC International Launch Pinpoint

KB and HPC International Launch Pinpoint

Klein Buendel has partnered with HPC International, a leading purchased services provider for healthcare, corporations and academic institutions, to create Pinpoint™, the first-of-its-kind sickle cell pain management app, which provides a safe, interactive, and convenient way for patients to learn about, track, assess, and communicate with their doctors about their sickle cell pain.

The Pinpoint sickle cell pain management app provides a safe, interactive, and convenient way for patients to learn about, track, assess, and communicate with their doctors about  sickle cell pain.

Developed with teens in mind, people of all ages benefit from the Pinpoint app to identify different types of pain associated with sickle cell disease. Using gaming technology, Pinpoint offers an innovative pain assessment tool and a pain diary to log physical and emotional pain symptoms. With the touch of a finger, patients are able to describe and assess the intensity, duration, quality, nature, and location of the pain and report it to their caregivers and physician in real-time. Pinpoint is a web app and works on any smartphone or smart mobile device. Patients can play games, watch videos, learn preventive health tips, and visit the Patient Stories section with real stories and inspirational messages told by other sickle cell patients. 

Sickle cell disease is an inherited disorder of the red blood cells that disproportionately affects people of color. Chronic pain is the most common complication and profoundly disrupts people’s quality of life. Clinicians are often unsuccessful at addressing chronic pain in sickle cell disease, underscoring the need for the Pinpoint app. 

“The pain caused by sickle cell disease is incredibly difficult to manage and ‘pinpoint,’ especially for young patients,” said Hilton Hudson, MD, FACS, CEO of HPC International. “When meeting with top researchers at Children’s Hospital in Washington D.C., we all agreed that clinicians needed a better way to treat the different types of pain sickle cell patients may experience, which led HPC to develop a tool to do just that.” 

“Teaming up with HPC International and supported by grants from the NIH, Klein Buendel was privileged to create a supportive pain management tool for patients with sickle cell disease,” said Mary Buller, MA, President of Klein Buendel. “HPC and Klein Buendel combined content experts and web developers into a winning combination for patients and doctors.” 

The educational content in the Pinpoint app comes from the renowned and best-selling Hope & Destiny book series, written by three clinical expert leaders in hematology: James Eckman, MD, Lewis L Hsu, MD, PhD and Allan Platt, PA-C, MMSc. Hope & Destiny is Hilton Publishing’s premier educational book series on sickle cell disease and is tailored for different reader age groups, including adults and parents as well as adolescent patients. 

The Pinpoint app development project was facilitated through two Small Business Innovative Research (SBIR) grants, awarded in 2016 and 2018 by the National Institutes of Health (NIH). HPC collaborated with Klein Buendel, medical experts, teens, and parents of children with sickle cell disease to study how an interactive app with a customized pain assessment tool could provide an improved way for adolescents with sickle cell disease to learn about and better manage their disorder. The study’s Expert Advisory Board was formed by clinicians from institutions and nonprofit organizations including HOPE for SCD, UIC, Emory Healthcare, Children’s National, Marquette University College of Nursing, and the International Association of Sickle Cell Nurses and Professional Associates.

Pinpoint has been clinically evaluated to help aid in the management of pain caused by sickle cell disease. Market research, focus groups, surveys, interviews, and two comprehensive research studies were conducted virtually and in-person with teens, parents and clinical specialists representing communities across the country from 2016 through 2022.  Research reported in this press release was supported by the National Institute on Minority Health and Health Disparities under grant numbers R43MD010746 and R44MD010746 awarded to Klein Buendel (Dr. Valerie Myers, initial Principal Investigator; Ms. Julia Berteletti, final Principal Investigator). Pinpoint was designed and programmed by Mr. Adam Ashby of the Klein Buendel Creative Team.

Already, Pinpoint has been featured in:

Sickle Cell Disease News, a healthcare industry website, which provides the sickle cell disease community with the most recent news and information on sickle cell disease.

MedCity News, a leading digital healthcare outlet.

LegalReader.com in their Health & Medicine section on August 23rd.

Healthcare IT Today, a leading digital health tech outlet, in a roundup of healthcare industry news (under the ‘Partnerships’ section) on August 17th.

Pinpoint is available to individuals and medical providers. An individual annual subscription fee is $9.99. To learn more about the Pinpoint app, check out the video tutorial or visit HPC International.

Collaborator Spotlight:
Dr. Hilton Hudson

Collaborator Spotlight:
Dr. Hilton Hudson

Hilton M. Hudson, MD, FACS, of HPC International, Inc. (HPC), is a Co-Investigator on a SBIR Phase II research project with Dr. Valerie Myers (Principal Investigator) from Klein Buendel called, “Pinpoint: Gaming Technology to Engage Adolescent Sickle Cell Patients in Precision Pain Management. The project is funded by the National Institute on Minority Health and Health Disparities (MD010746) at the National Institutes of Health. As an African American, a surgeon, a researcher, and the CEO of a publishing company, the effective management and treatment of sickle cell disease is very important to Dr. Hudson. In fact, HPC is the publisher of two preeminent books on sickle cell disease for the public: Hope and Destiny for adults and Hope and Destiny, Jr. for adolescents.

Dr. Hudson is one of less than 40 board-certified, African-American cardiothoracic surgeons currently practicing in the United States. He is a partner of the Institute of Cardiothoracic and Vein Surgery, LLC in Illinois and serves on the Board of Directors for the Healthcare Supplier Diversity Alliance. During his 25+ years of practicing medicine, Dr. Hudson has also served as Chairman of the Board at Heartland Hospital in Munster, Indiana and as the Chief of Cardiothoracic Surgery at the Franciscan Physicians Hospital in Munster, Indiana.

With respect to his research experience and publications, Dr. Hudson is perhaps best known for authoring and publishing the successful book, “The Heart of the Matter: The African American’s Guide to Heart Disease, Heart Treatment, and Heart Wellness,” in 2000, which has subsequently been revised and translated into Spanish with total collective sales of over 75,000 copies.

In addition to practicing medicine, Dr. Hudson is the President and CEO of HPC International, Inc. (formerly the Hilton Publishing Company, Inc.), which he co-founded in 1996 to publish trusted content that can improve the health, education, awareness and wellness of health disparate and other underserved populations. “Around that time,” recalls Dr. Hudson, “I started practicing medicine as a cardiothoracic surgeon and immediately noticed an unfortunate but quite obvious correlation between the socio-economic, racial and gender status of my patients and subpar health. Patient after patient from these community groups lacked the education to teach them how simple changes to their daily habits and health routines could significantly reduce many of their risks for heart issues and other chronic diseases. I spent a lot of time researching what information was available for patients, and discovered a critical gap — a need for new health literature that would be culturally meaningful, evidence-based and impactful for improving the state of health in our health disparate populations. When multiple publishers declined to publish the book for me, I started a new company to do it myself!”

Born in Indianapolis, Indiana, Dr. Hudson is a graduate of Wabash College in Crawfordsville, Indiana, where he earned a Bachelor of Arts degree with honors in English and Math in 1980. He earned his medical degree at Indiana University Medical Center in 1987. Dr. Hudson then completed his Cardiovascular Surgery Extern at Methodist Hospital and his residency for General Surgery at Boston City Hospital and Boston University Hospital before serving in the U.S. Army Medical Corps from 1992-1998. During his years in the military, Dr. Hudson completed a fellowship for Cardiothoracic Surgery at Ohio State University in Columbus. That was 1994, just two years before he founded HPC.

In 2014, HPC started a new affiliated company called EMIC LLC (Evidence-based Medical Information Company) to disseminate evidence-based products and e-health programs on technology platforms to facilitate positive health behavior, empower patients with trusted evidence-based information, and improve the quality of healthcare.

Dr. Hudson has received many distinguished awards and honors throughout his career, including:

  • The Sagamore of the Wabash Award for Distinguished Service in Minority Health which he received from the Governor of Indiana in 2000;
  • A Nomination for the Humanitarian Award by the International Society on Hypertension in Blacks in 2003; and
  • The Award for Achievement in Health in the State of Indiana which was presented to him by Governor Mitch Daniels in 2008.

Pinpoint: A Pain Management Tool for Teens with Sickle Cell Disease

Pinpoint: A Pain Management Tool for Teens with Sickle Cell Disease

Klein Buendel (KB) Senior Scientist, Dr. Valerie Myers, is the Principal Investigator leading a new research project to improve a self-care and pain management tool for teens with Sickle Cell Disease (SCD). SCD is the most common inherited blood disorder in the U.S. It affects primarily African Americans and Hispanics. Approximately, 100,000 people in the U.S. suffer from SCD and serious, painful complications can have a significant impact on well-being and quality of life.

Using interactive technology accessible on computers, tablets, and smartphones, the Pinpoint app will combine education, healthy living tips, and tools for managing pain through at-home techniques like relaxation, self-reflection, and a better understanding of the different types of pain teens might experience (acute versus chronic pain).

In a Phase I project, an initial prototype of Pinpoint was developed and reviewed. It included a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book authored by Hsu, Rodrigues, and Brandalise. Four healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice. Sixteen teens participated in cognitive interviews, focus groups, and usability testing. The System Usability Scale (SUS; Bangor et al., 2011), a validated tool for assessing the usability and acceptability of technological products, served as the primary outcome. The preliminary SUS score well above average, suggesting a high level of acceptability and usability among users.

The full Pinpoint app being developed in the new Phase II study can be used in healthcare settings to reduce barriers in obtaining information from adolescents by using technology they are comfortable with and enjoy using, while also providing important pain data to healthcare teams and family that affect treatment options. By empowering teens with knowledge and enhanced communication skills, Pinpoint can help reduce emergency room visits and assist SCD teens to transition more successfully to adulthood with independence.

The Pinpoint project is being funded by the National Institute on Minority Health and Health Disparities at the National Institutes of Health (MD010746). It is being conducted in close partnership with the Hilton Publishing Company (HPC), the publisher of Hope & Destiny Jr., a leading book for teens on SCD management. Dr. Myers’ research collaborators include Ms. Mary Buller from KB, Dr. Lewis Hsu from the University of Illinois, Mr. Allan Platt from Emory University in Georgia, Dr. Gary Cutter from Pythagorus, Inc. and the University of Alabama at Birmingham, and Dr. Hilton Hudson from HPC. KB’s developers will design and program the Pinpoint app.

Precision Pain Management App for Adolescents with Sickle Cell Disease

Precision Pain Management App for Adolescents with Sickle Cell Disease

Dr. Valerie Myers, KB Senior Scientist, is presenting a poster on the Pinpoint Project at the 39th Annual Meeting and Scientific Sessions of the Society of Behavioral Medicine, April 11-14, 2018 in New Orleans, Louisiana.

“Pinpoint: Gaming Technology to Engage Adolescent Sickle Cell Patients in Precision Pain Management” was a Phase I SBIR project that examined the feasibility and acceptability of a gamified tablet application intended to encourage teens (aged 13-17) to assess and talk about their sickle cell disease (SCD) pain. SCD is the most common inherited blood disorder in the U.S. and affects primarily African Americans and Hispanics. Approximately, 1,000 U.S. children are born with SCD annually. SCD complications can be serious and have a significant impact on well-being and quality of life.

Pain is the hallmark symptom associated with SCD and is the primary cause of SCD-related hospital admissions. Accurate assessment of pain specifiers (type, frequency, and intensity of pain) can help with ameliorating pain quickly and effectively. Reducing barriers to collection and promoting the value of accurate SCD pain assessment is a need in pediatric medicine. The interactive games for health literacy among youths have shown video games can improve self-efficacy; stimulate health discussions with friends, family, and clinical team; encourage seeking support and advice, and can emphasize behavior acquisition via experiential learning. Interactive games can provide information about causes, treatments, and self-care options, and can improve self-care and reduced emergency clinical utilization.

The Pinpoint app prototype for tablets and smartphones consisted of a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book authored by Hsu, Rodrigues, and Brandalise. Four healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice. Sixteen teens participated in cognitive interviews, focus groups, and usability testing. The System Usability Scale (SUS), a validated tool for assessing the usability and acceptability of technological products, served as the primary outcome. The preliminary SUS score well above average, suggesting a high level of acceptability and usability among users. The conference poster will include final project outcomes and the plan for the future development of the full Pinpoint app.

This research was funded by a grant from the National Institute on Minority Health and Health Disparities (R43MD010746; Dr. Valerie Myers, PI). Research collaborators included Mary Buller from KB, and Dr. Hilton Hudson and Megan Lippert from the Hilton Publishing Company, publishers of the Hope & Destiny and Hope & Destiny Jr. sickle cell disease management books.