Feasibility of RetinoQuest: e-health application to facilitate and improve additional care for retinoblastoma survivors.

PURPOSE: The current study aimed to evaluate the feasibility of RetinoQuest in clinical practice, from survivors and healthcare professionals' (HCPs) point of view. METHODS: RetinoQuest is a touch screen computer program to monitor health-related quality of life (HRQoL) of retinoblastoma survivors via patient-reported outcome measures (PROMs) targeting children (4-10 years) as evaluated by their parents (proxy measures), adolescents (11-18 years), and adults. Feasibility was evaluated by the actual time taken to complete the PROMs, acceptability of the time as perceived by the users, the content of PROMs in RetinoQuest, and overall satisfaction with RetinoQuest. RESULTS: Ninety-six survivors participated: 41 parents of children, 38 adolescents, and 17 adults. Mean time to complete the evaluation form was 7.8 min (median 6.7, range 2.4-24.5), and 90% of the users stated that the time needed to complete PROMs in RetinoQuest was acceptable. The majority of users reported that it was important to answer the questions (88% of the parents, 66% of the adolescents, and 76% of the adult survivors) and that all important issues were covered, e.g., no missing questions (78, 84, and 76%, respectively). Satisfaction rate was high, 7.8 according to parents, 8.1 according to adolescents, and 7.7 for adults. CONCLUSIONS: RetinoQuest is a feasible e-health application to monitor HRQoL in retinoblastoma survivors in clinical practice. IMPLICATIONS FOR CANCER SURVIVORS: This tool allows for open and structured communication which can lead to early detection of psychosocial impacts on quality of life and referral of the retinoblastoma survivors.

Computerized prospective screening for high levels of emotional distress in head and neck cancer patients and referral rate to psychosocial care.

To investigate prospectively the prevalence of high levels of emotional distress and referral rate to psychosocial care in head and neck cancer (HNSCC) patients. Fifty-five consecutive newly diagnosed HNSCC patients were asked to complete the hospital anxiety and depression scale (HADS) and the EORTC QLQ-C30 and H&N35 quality of life questionnaires on a touch screen computer-assisted data collection system on their first visit and during follow-up visit. Sociodemographic, clinical, and quality of life parameters were compared to a high level of distress (HADS score >15). Number of patients with a high level of distress were compared to referral rates to psychosocial care as retrieved from patient hospital files. At time of diagnosis, 18% (10/55) of the patients had a high level of distress (related to tumor stage and site, and global quality of life and social eating) versus 25% (14/55) at follow-up (related to a variety of quality of life parameters). Low levels of distress at baseline or follow-up was noted in 64%; 18% had normal scores at baseline and developed distress at follow-up; 11% had high levels at baseline and returned to normal scores at follow-up, and 7% had persistent distress from baseline to follow-up. No patients were referred to psychosocial care at time of diagnosis. At follow-up visit 21% (3/14) were referred, all patients who developed a high level of distress after initial diagnosis. High level of emotional distress is common and few patients are referred to psychosocial care. Development of a stepped care model (including careful monitoring by using a touch screen computer system) may meet the potentially unmet needs of HNC patients and contribute improving cancer care.