Table 2 e-PROMs characteristics
From: Electronic patient-reported outcomes (e-PROMs) in palliative cancer care: a scoping review
Software | Device | Characteristics | e-PROMs supported | Domains | Patient outcomes |
|---|---|---|---|---|---|
Tell Us™ Dy et al. [47] | Any | – Opened through standard web browsers, operating systems and hardware platforms; – Can include any questionnaires desired for particular patients; – Feedback through email; – Educational materials | – ND | Functional and psychological symptoms | Symptoms: could improve the management of patients' symptoms through questions targeted to their specific needs Communication: could improve the quality of information Supplementary utility: ND |
HealthHUB™ Cox et al. [59] | Computer | – Connected to patients’ landlines at home; – Clinicians receive alerts on their side of the software; – Available symptom-specific advice included in the tool | – ESAS – EQ-5D | Pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath, mobility, self-care, usual activities, pain/discomfort | Symptoms: evaluation, rapid and continuous assessment of symptoms Communication: removes eye contact between clinicians and patients, supports patients in expressing their needs Supplementary utility: could empower the patient, provide a useful record of patient symptom experience and provide accurate data for audit purposes and commissioner reports |
EPCRC-CSA Hjermstadet al. [51] | Tablet | – Each item must be answered before proceeding; – A computerized pain body map is included; – In relation to specific scores, the assessment asks the patient to address other questions more suitable to exploring that problem | – ESAS – EORTC QLQ-C30 – BPI – PRIME-MD PHQ9 – SGA 24 | Pain, quality of life, physical function, depression, nutritional intake, need for assistance, time expenditure | Symptoms: targeting symptomatic treatment, facilitating symptom assessment. Scores on the EORTC QLQ-C30 were significantly lower among those who did not complete the PROM (p < 0.001) and significantly more intense symptoms on the ESAS (p = 0.019–0.039) with significantly lower survival (p = 0.010) Communication: identify areas of particular concern and improve clinician–patient communication Supplementary utility: less time spent to complete the assessment than the paper version; elimination of missing responses |
MyPAL Karamanidouet al. [57] | Smartphone | – Sends notifications encouraging patients to complete questionnaires; – Contains educational material; – Allow patients to upload photos; – Clinicians can decide to call patients and suggest a visit, exam or therapy; | – ND | – ND | Symptoms: viewing symptoms over time could reflect the trajectory of the disease Communication: would allow communication on difficult topics with patients Supplementary utility: freedom in reporting symptoms; could relieve patients from misinformation and stress |
CHES Giesinger et al. [52] | Tablet | – Does not give feedback | – EORTC QLQ-C30 | Quality of life | Symptoms: Worsening symptoms and are synonymous with disease progression and approaching death and help predict patients’ needs. Physical function decreases significantly in the last 90 days of life (p = 0.017), as do sleep disturbances (p = 0.039) and taste alterations (p = 0.047) Communication: standardized self-reports used daily can contribute to symptom management and improve communication Supplementary utility: ND |
ePROhub Tang et al. [55] | Smartphone | – Runs with the app WeChat; – Clinicians are able to give feedback | – MDASI – ISI – HADS – PHQ-9 – EQ-5D-5L – DT | Insomnia, anxiety and depression, health-related quality of life, mobility, self-care, usual activities, pain/discomfort, distress, practical problems, communication problems, spiritual and religious problems, nausea and vomiting | Symptoms: project aims to enable more efficient symptom management at home Communication: ND Supplementary utility: ND |
N.D. Stukenborg et al. [56] | Tablet | – ND | PROMIS questions | Anxiety, depression, fatigue, pain interference, physical function, diarrhea, constipation, nausea, vomiting, anorexia, dyspnea, neuropathy and spiritual values | Symptoms: precise measurements improving quality of care Communication: improving decision-making by incorporating the patient's perspective Supplementary utility: ND |
N.D. LeBlanc et al. [49] | Tablet | – ND | PCM version 2.0 | Functional and psychological symptoms | Symptoms: many items for many different symptoms, more appropriate for patients in disease progression Near death, severe/moderate symptoms increase; 84% of patients have severe fatigue within three months of death (p = 0.007) Communication: ND Supplementary utility: ND |
N.D. Suh et al. [48] | Tablet | – ND | PMC 2.0, FACIT-F, FACT-L | Pain, fatigue, nausea, depression, quality of life, insomnia, physical function, appetite/nutritional intake, tiredness, anxiety, drowsiness, emotional problems, well-being, social/role functioning | Symptoms: prognostic value of impaired performance (Z = 2.13, P = 0.03); has a power similar to KPS and ECOG scores. Impaired ambulation was not statistically significant to evaluate that aspect (Z = − 1.11, P = 0.26) Communication: ND Supplementary utility: performance status metrics recorded by clinicians are buried in text-based documentation, making it difficult to view trends over time. ePRO assessments are reliable, valid, instantly available, and easily tracked longitudinally |
N.D. Nipp et al. [54] | Tablet | – ND | – ESAS – PHQ-4 | Pain, fatigue, nausea, depression, constipation, appetite/nutritional intake, tiredness, drowsiness, well-being | Symptoms: symptom reports provided numeric symptom scores and alerts for any specific symptom worsening by 2 or more points from the previous assessment or for any symptom reaching an absolute score of 4 or higher. They also contained graphs depicting patients’ symptom trajectory. IMPROVED did not have a significant effect on patients’ symptoms or health care use Communication: ND Supplementary utility: ND |
RELIEF Bhargava et al. [50] | Any | – Clinicians are alerted of patients’ score | – ESAS-r – DT – BPI | Pain, fatigue, depression, constipation, drowsiness, tiredness, nausea, appetite loss, anxiety, well-being | Symptoms: alert to health care provider if the patients reported an increase of 2 points each day, an increase of 3 points over the previous day, or any score of 8 or higher, for any of the symptoms listed in the ESAS-r, DT, or BPI. RELIEF allowed for timely initiation of appropriate clinical interventions Communication: a review of the patient’s care goals was followed by a discussion with the patient and family to discuss the plan to address the symptoms Supplementary utility: Reduction of the access to emergency department and admission to hospital, reduction of health care costs, equity in care access |
Ambuflex Friis et al. [53] | Tablet | – ND | – EORTC QLQs C30 LC13 | Quality of life | Symptoms: worsening symptoms give information about prognosis. The absolute value of fatigue (p < 0.001) and pain (p < 0.001) are indicators of disease progression. Hemoptysis and chest pain offered significant information on survival to progression (p < 0.001) Communication: helps start end-of-life discussions and aids decision-making by terminally ill patients Supplementary utility: ND |
N.D. Kallen et al. [58] | Computer | – The provider can access patient records (lab results, PRO assessments, medical history); – Electronic access to an Opioid Converter, a Physician Handbook, and a Nurse Handbook; – The Edmonton Labeled Visual Information System (ELVIS) can be used by health care professionals to document complex cancer burden and treatment information; it demonstrates superior ability over text | – ESAS – CAGE questionnaire | Pain, fatigue, nausea, depression, nutrition intake, tiredness, drowsiness, well-being | Symptoms: improve quality of care facilitating temporal and potentially causal relationship between outcomes and clinical events reported on a timeline Communication: this system could facilitate communication among members of a multidisciplinary team and patients; help decision-making Supplementary utility: improve patients' comprehension of their health status; patients appreciated being able to review and peruse their own medical history and lab results |