Remote monitoring of pain and symptoms using wireless technology in children and adolescents with sickle cell disease

Abstract

Purpose The purpose of this study was to examine 1) symptoms; 2) pain characteristics (intensity, location, quality); 3) pain medications and nonpharmacological strategies used for pain; 4) thoughts and feelings; and 5) health care visits. We also examined the relationship between pain and sleep. Data Sources Pain and symptoms were entered on an electronic e-Diary using a smartphone and were remotely monitored by an advanced practice registered nurse. Sixty-seven children and adolescents (10 to 17 years) reported mild to severe pain at home that did not require health care visits. Symptoms reported were: 1) general symptoms such as tiredness/fatigue (34.7%), headache (20.8%), yellowing of the eyes (28.4%); 2) respiratory symptoms such as sniffling (32.9%), coughing (19.1%), changes in breathing (10.0%); and 3) musculoskeletal symptoms such as stiffness in joints (15.8%). A significant negative correlation was found between pain and sleep (r = −0.387, p=0.024). Factors that predict pain included previous history of SCD related events, symptoms, and negative thoughts. Conclusion Pain and multiple symptoms entered on a web-based e-Diary were remotely monitored by an APRN and prompted communications, further evaluation, and recommendations. Implications for Practice Remote monitoring using wireless technology may facilitate timely management of pain and symptoms and minimize negative consequences in SCD.

Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

“…The findings indicate that recommendations for self‐monitoring and diagnosis, using objective methods and measurements such as thermometers, splenic palpation, and self‐assessment tools, are limited in the Ghanaian health professionals' recommendations. In contrast, researchers of SCD self‐management in the United States have focused on objective measurements for pain self‐monitoring to understand pain frequency, characteristics, related symptoms, and home management . Typically, these researchers in mostly interventional studies have asked patients to rate their pain using assessment tools, interpret their pain experience, identify related symptoms, categorise their pain and related symptoms to predetermined categories, and record their findings into paper or electronic diaries.…”

“…Typically, these researchers in mostly interventional studies have asked patients to rate their pain using assessment tools, interpret their pain experience, identify related symptoms, categorise their pain and related symptoms to predetermined categories, and record their findings into paper or electronic diaries. Self‐monitoring and diagnoses were facilitated by e‐health technologies in 2 studies . In Jacob et al, there was live communication between the patient and an advanced practice nurse, specialised in SCD, who remotely monitored patients' entries and contacted patients who required attention.…”

“…Internationally, SCD self‐management research has generally been conducted among patients and little has been done to elicit the perspectives of health professionals. Currently, no internationally agreed best practice standards have been published to guide health professionals to support SCD self‐management.…”

Simvastatin reduces vaso‐occlusive pain in sickle cell anaemia: a pilot efficacy trial

“…A web-based electronic diary (eDiary) accessed by smartphone was used to report daily sickle cell-related pain, pain intensity, use of oral or parenteral analgesics and visits to a medical facility. The eDiary was previously developed for use in SCD and included well-validated metrics to assess pain specifically attributed to SCA-related vaso-occlusion, including mild daily pain as well as more severe pain associated with an acute VOC (Jacob , et al 2013a, Jacob , et al 2014, Jacob , et al 2013b, Jacob , et al 2012). The eDiary also included a section for comments using free text to describe pain that was not considered to be sickle cell-related pain.…”

Pain assessment methods and interventions used by pediatric psychologists: A survey by the Pain Special Interest Group of the Society of Pediatric Psychology.

“…While this is fairly new territory, numerous studies now support the use of these methods in multiple pediatric pain populations, including children and adolescents with cancer (Fortier et al, 2016; Jibb et al, 2014), sickle cell anemia (Jacob et al, 2013) and mixed chronic pain diagnoses (Stinson et al, 2014; Palermo et al, 2016; Voerman et al, 2015). In addition, distraction techniques that rely upon video games or virtual reality technology have been found efficacious during experimentally induced pain (Sil et al, 2014; Dahlquist et al, 2010) and pain among children with burns (Miller et al, 2011).…”