A New Way
to Manage Pain

Pinpoint™
An HPC and Klein Buendel collaboration

What is
Sickle Cell Disease?

Common Types of SCD

• HbSS
• HbSC
• HbS Beta Thalassemia

Sickle cell disease is a common blood disorder someone is born with, inherited genetically from their parents, where red blood cells form into hard C-shaped cells instead of their normal healthy, soft, round shape. There are different types of blood cells that travel through the body, each with important jobs to do. White blood cells help fight infections, platelets help stop bleeding when you get a cut or scrape, and red blood cells carry oxygen throughout the body. For someone with sickle cell disease, the sickled red blood cells can easily get stuck trying to move through the body, causing a traffic jam where other blood cells can’t continue on their path. This type of blockage of the blood cells can create severe pain and many other health complications, some of which are quite serious and require emergency medical treatment.

Sickle cell disease is truly an international disease affecting more than 30 million individuals from all different cultures around the world and an estimated 100,000+ people in the United States alone, though it does disproportionately affect patients of color and people who are frequently exposed to malaria from regions like West and sub-Saharan Africa, Southeast Asia, the Indian subcontinent, and near the Mediterranean. It is the most common serious genetic disorder in the United States, more common than cystic fibrosis and hemophilia. Most American hospitals screen all newborn babies at birth for the type of hemoglobin responsible for causing sickle cell disease.

How to manage and differentiate between the chronic and acute pain and track all the symptoms caused by sickle cell disease is an ongoing challenge for patients with this blood disorder. So, to help combat that challenge, we created Pinpoint.

Key Features

Pain Assessment and Tracking

Pinpoint offers an innovative Pain Assessment Tool that patients can use with the touch of a finger to assess their pain and symptoms which they can log into the Pain Diary

Games

Patients can play games to learn SCD terminology and words that will help them to more specifically describe their physical and psycho-social pain symptoms when communicating with their parents and caregivers

Data Sharing

Pinpoint works on any smartphone or smart mobile device and pain assessment reports can be shared electronically with parents and/or providers through the app with the teen’s consent

Educational Content

Hope & Destiny Series

The educational content in the Pinpoint app comes from the renowned and best-selling Hope & Destiny book series, written by leading clinical experts in hematology: James Eckman, MD; Lewis L Hsu, MD, PhD; and Allan Platt, PA-C, MMSc.

Hope & Destiny is HPC International, Inc.'s premier educational book series on sickle cell disease, and access to much of this information is available through the Pinpoint™ app. Books in this series are tailored for different reader age groups including adults and parents as well as adolescent patients.

Clinically Evaluated

Market research, focus groups, surveys and interviews were conducted virtually and in person with teens, parents and clinical specialists in communities across the country as part of the Pinpoint study recruitment. The initial prototype consisted of a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book. Healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice (n=4). Teens participated in cognitive interviews, focus groups, and usability testing (n=16), of which the average age was 14.5 + 1.3 years, 33.75% were female, and 50% were diagnosed with Hb SS (n=13).

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 (n=5) was 82.5 (68% is “above average”), suggesting a high level of acceptability and usability among users. The Phase II study was completed in Dec 2021, and results will be released in late 2022.

Source; Myers VH, Buller MA, Strickfaden S, Jerrod T, Hudson H, Lippert M, et. al. (2018, April). Pinpoint: Gaming technology to engage adolescent sickle cell patients in precision pain management. Poster presented at the annual meeting of the Society of Behavioral Medicine. New Orleans, LA. http://kbcollaboratory.com/category/annual-report/

Download the Pinpoint Research Study Results

Built by Clinical Experts: Key Contributors

Allan Platt, PA-C, MMSc

Allan Platt was the former Program Coordinator, and Physician Assistant at the Georgia Comprehensive Sickle Cell Center at Grady Health System. He is the current web designer of The Sickle Cell Information Center at www.SCInfo.org, and edits a monthly sickle cell newsletter via email on the latest research news that is distributed to 4,000 readers worldwide. Platt developed a PDA pain assessment tool and conducted pain assessment research. Platt is co-author of several sickle cell titles from Hilton Publishing.

Lewis L. Hsu, MD, PhD

Dr. Lewis Hsu is a pediatric hematologist dedicated to finding more cures for sickie cell disease and improving treatment and education until cures can be found. He is currently Professor at University of Illinois at Chicago. He has 20 years of experience in leadership of some of the largest sickle cell programs in the country. He has over 100 peer-reviewed papers, mentored numerous physicians and graduate students and contributed to 4 sickle cell websites devoted to patient education.

Deepika Darbari, MD

As Pediatric Hematologist-Oncologist at Children’s National Hospital and Professor of Pediatrics at George Washington University, Dr. Darbari has studied complications of sickle cell disease (SCD) with a focus on pain. She’s contributed to improved understanding of mechanisms of sickle cell pain, risk factors associated with high pain burden in SCD patients, integrative pain management, and the development of diagnostic criteria for acute and chronic pain. The American Society of Hematology recognized her commitment to promoting diversity in medicine and hematology with their 2021 Award for Leadership in Promoting Diversity.

Hilton Hudson, MD, FACS

Dr. Hilton Hudson is the Chief of Cardiothoracic Surgery at Franciscan Physicians Hospital. Dr. Hudson is also the founding President & CEO of HPC International, Inc. (HPC), a minority-owned business that specializes in the publication of SCD educational content. "I'm committed to seeing that every person, regardless of color or station in life, has access to the resources, information, and medical care they will need to live long, productive lives," said Hudson.

Parent Advisory Board Members

Lisa Meatchem
Marque Reed-Shackelford
Myesha Soukup
Oyewola Adeyinka
Sameta Carpenter
Shornita Shavers
TaLana Hughes, MPH, Executive Director of SCDAI
Tanya Anderson

Research & News about Pinpoint™

Publications:

Myers VH, Buller MA, Strickfaden S, Jerrod T, Hudson H, Lippert M, et. al. (2018, April). Pinpoint: Gaming technology to engage adolescent sickle cell patients in precision pain management. Poster presented at the annual meeting of the Society of Behavioral Medicine. New Orleans, LA. http://kbcollaboratory.com/category/annual-report

Hudson H, Hsu L, Lippert M, and Platt A. (2022) Promoting health equity in the publishing industry: 2 decades of investment in sickle cell, Journal of Sickle Cell Disease and Hemoglobinopathies. June 10, 2022, p. 129. Sept19-Final-June-10-2022-JSCDH-Publication-combined_2-combined-combined-combined_1-2-combined-1.pdf

MedCity News, a leading digital healthcare outlet, featured a story about Pinpoint™ in August 2023, available here: https://medcitynews.com/2023/08/app-sickle-cell-disease-teens

Healthcare IT Today, a leading digital health tech outlet, featured the Pinpoint™ app launch in a roundup of healthcare industry news (under the ‘Partnerships’ section) in August 2023, available here: https://www.healthcareittoday.com/2023/08/13/bonus-features-august-13-2023-75-of-executives-thing-generative-ai-has-reached-the-point-where-it-will-reshape-healthcare-64-of-patients-would-trust-ai-over-a-doctor-to-make-a-di

Sickle Cell Disease News featured the Pinpoint™ app launch in August 2023, available here: https://sicklecellanemianews.com/news/new-app-sickle-cell-disease-helps-patients-manage-pain

LegalReader.com featured HPC’s recent press release about Pinpoint™ in their Health & Medicine section in August 2023, available here: https://www.legalreader.com/hpc-international-launches-pinpoint-app-to-manage-pain-symptoms-associated-with-sickle-cell-disease

Research / Grants:

2018/09/19-2021/06/30 R44MD010746, National Institute on Minority Health and Health Disparities (NIMHD). PINPOINT: Gaming technology to engage adolescent sickle cell patients in precision pain management, Myers, Valerie H. (PI). This Phase II SBIR project aims to create Pinpoint, an interactive gaming tablet app that will be developed with the significant input of clinical experts to assist sickle cell disease teens with better identification and self-report of their pain. Role: Marketing & Research Assistant. Status: Completed 2021.

2016/01/13 – 2017/09/30 R43MD010746, National Institute on Minority Health and Health Disparities (NIMHD). PINPOINT: Gaming technology to engage adolescent sickle cell patients in precision pain management, Myers, Valerie H. (PI). This Phase I project aims to create Pinpoint, an interactive gaming tablet app that will be developed with the significant input of clinical experts to assist sickle cell disease teens with better identification and self-report of their pain. Role: Marketing & Research Assistant. Status: Completed 2017.