During the opening ceremony of the 2012 Olympic Games in London, England, there was a curious segment that baffled many overseas viewers: performers cheerfully forming the initials “NHS.” “NHS” stands for the National Health Service—the national network of healthcare services in the UK that is free at the point of delivery. Some have commented that the preservation of the core tenets of the NHS has become something of a secular religion for many people living in the UK.
Unfortunately, the NHS has been struggling to keep up with increasing demand; the lack of hospital beds and long waiting times have been ubiquitous. Pressure is piling on, especially as the UK struggles to recover from the pandemic. There are shortages of general practitioners and widespread dissatisfaction with pay.
What can be done to take pressure off the NHS, and indeed, healthcare systems across the world? Experts have proposed a rethink of healthcare, moving from a framework centered around healthcare facilities and hospitals toward homes. In other words, nonurgent, routine care would increasingly be administered in a home setting. Patient-reported outcomes (PROs) would play a central role in how physicians receive feedback on prescribed treatment regimens.
Detecting Symptom Changes Through PRO Monitoring
“Patient-reported outcomes (PRO) are defined as any report of the status of a patient’s health condition that comes directly from the patient, without interpretation by a clinician,” Bänziger and colleagues explained in the Annals of Hematology.
They sought to investigate the merits of PROs in the management of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia (AA). Both these diseases are excellent candidates for the use of PROs because they require careful symptom monitoring to prevent the development of potentially life-threatening complications.
Read more about PNH etiology
The research team developed an electronic PRO system adapted specifically to address the needs of patients with PNH or AA. They enrolled 9 patients with PNH and/or AA; the inclusion criterion was that they must have Internet access with prior experience with emails. The selected patients were recommended by their treating physicians for suitability.
The electronic PRO system assessed 11 core symptoms in PNH/AA, which were determined after a detailed consultation process. Health-related quality of life was separately assessed at the start and end of the study. Two physicians were appointed to review the responses daily and take action if severe symptoms were reported.
The research team discovered that the most common complaint in both diseases was fatigue. Symptoms most often graded as being severe were fatigue in PNH and bleeding in AA. Among the 331 symptoms recorded, 36 were severe enough for the treating physician to be alerted.
Feasibility of Electronic PRO Monitoring
As for the patient experience itself, patients rated the application as being “easy to use” and the questionnaire as being “easy to understand.” The overwhelming feedback was that they were satisfied with the novel reporting system, which could be easily accessed via smartphone.
“It was feasible to customize a disease-specific electronic PRO system for AA/PNH patients and their medical team, showing a high potential for these rare and chronic conditions in terms of adherence, satisfaction, and performance,” the authors of the study concluded.
Read more about PNH treatment
Indeed, the incorporation of PRO systems into disease-specific categories is likely to be an important development in the effort to make healthcare more accessible to all. The keys here are to ensure that patients feel comfortable reporting their disease-specific symptoms via a secure, easy-to-understand scoring system and that emergencies are detected should they arise.
“Many institutions are integrating PROs into clinical practice and are identifying challenges and strategies for successful implementation,” Basch and colleagues wrote in the American Society of Clinical Oncology Educational Book.
This means that the incorporation of PRO systems into clinical practice is fast maturing; it is no longer a nascent field as it was a decade ago. Researchers are identifying the best steps to identify areas of concern specific to disease types; these areas are then adapted into questionnaires for patients and caregivers.
As with all efforts requiring the use of technology, hiccups may occur. Noncompliance may be an issue. In the study with patients with PNH/AA, 4 patients each reported “forgetting” and “being too busy” as among their reasons for nonadherence. In addition, there is always the concern that patients may miss out on warning signs of an impending crisis due to unfamiliarity with their disease.
However, there are promising signs that clinicians are becoming more adept at dealing with these potential issues. One of the reasons PRO systems are so promising is that they can easily be adapted with the input of new information; clinicians can learn from their mistakes and develop new and improved versions of their PRO systems.
Eventually, the use of technology in the implementation of PRO systems may become increasingly commonplace, just as it is now the norm for physicians to record their notes electronically for ease of reference. The implementation of PRO systems will further enhance the patient-physician partnership and provide a new way forward for healthcare to remain accessible and affordable to all in this young century.
Basch E, Barbera L, Kerrigan CL, Velikova G. Implementation of patient-reported outcomes in routine medical care. Am Soc Clin Oncol Educ Book. 2018;38:122-134. doi:10.1200/EDBK_200383
Bänziger S, Weisshaar K, Arokoski R, et al. Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH). Ann Hematol. 2023;102(1):199-208. doi:10.1007/s00277-022-05012-5