TY - JOUR
T1 - Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma
T2 - Randomized Controlled Trial
AU - Oerlemans, Simone
AU - Arts, Lindy Paulina Johanna
AU - Kieffer, Jacobien M
AU - Prins, Judith
AU - Hoogendoorn, Mels
AU - van der Poel, Marjolein
AU - Koster, Ad
AU - Lensen, Chantal
AU - Stevens, Wendy Bernadina Catharina
AU - Issa, Djamila
AU - Pruijt, Johannes F M
AU - Oosterveld, Margriet
AU - van der Griend, René
AU - Nijziel, Marten
AU - Tick, Lidwine
AU - Posthuma, Eduardus F M
AU - van de Poll-Franse, Lonneke V
N1 - ©Simone Oerlemans, Lindy Paulina Johanna Arts, Jacobien M Kieffer, Judith Prins, Mels Hoogendoorn, Marjolein van der Poel, Ad Koster, Chantal Lensen, Wendy Bernadina Catharina Stevens, Djamila Issa, Johannes F M Pruijt, Margriet Oosterveld, René van der Griend, Marten Nijziel, Lidwine Tick, Eduardus F M Posthuma, Lonneke V van de Poll-Franse. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 14.12.2021.
PY - 2021/12/14
Y1 - 2021/12/14
N2 - BACKGROUND: There has been a cultural shift toward patient engagement in health, with a growing demand from patients to access their results.OBJECTIVE: The Lymphoma Intervention (LIVE) trial is conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, satisfaction with information, and health care use in a population-based setting.METHODS: Return of PRO results included comparison with age- and sex-matched peers and was built into the Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. The self-management intervention is an adaptation of a fully automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to care as usual, return of PRO results, and return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), 4 months (T1; n=190), 12 months (T2; n=170), and 24 months (T3; n=98).RESULTS: Of all invited patients, 51.1% (456/892) responded and web-based participants (n=227) were randomly assigned to care as usual (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 76.7% (115/150) of those with access. No statistically significant differences were observed for psychological distress, self-management, satisfaction with information provision, and health care use between patients who received PRO results and those who did not (P>.05). Use of the self-management intervention was low (2/76, 3%), and an effect could therefore not be determined.CONCLUSIONS: Return of individual PRO results seems to meet patients' wishes but had no beneficial effects on patient outcome. No negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can therefore be safely implemented in daily clinical practice.TRIAL REGISTRATION: Netherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s13063-017-1943-2.
AB - BACKGROUND: There has been a cultural shift toward patient engagement in health, with a growing demand from patients to access their results.OBJECTIVE: The Lymphoma Intervention (LIVE) trial is conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, satisfaction with information, and health care use in a population-based setting.METHODS: Return of PRO results included comparison with age- and sex-matched peers and was built into the Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. The self-management intervention is an adaptation of a fully automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to care as usual, return of PRO results, and return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), 4 months (T1; n=190), 12 months (T2; n=170), and 24 months (T3; n=98).RESULTS: Of all invited patients, 51.1% (456/892) responded and web-based participants (n=227) were randomly assigned to care as usual (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 76.7% (115/150) of those with access. No statistically significant differences were observed for psychological distress, self-management, satisfaction with information provision, and health care use between patients who received PRO results and those who did not (P>.05). Use of the self-management intervention was low (2/76, 3%), and an effect could therefore not be determined.CONCLUSIONS: Return of individual PRO results seems to meet patients' wishes but had no beneficial effects on patient outcome. No negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can therefore be safely implemented in daily clinical practice.TRIAL REGISTRATION: Netherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s13063-017-1943-2.
KW - Humans
KW - Internet
KW - Lymphoma/therapy
KW - Netherlands
KW - Patient Reported Outcome Measures
KW - Research Design
KW - patient-reported outcomes
KW - DEPRESSION SCALE
KW - INFORMATION
KW - lymphoma
KW - HOSPITAL ANXIETY
KW - return of individual results
KW - self-management
KW - randomized controlled trial
KW - BREAST-CANCER
KW - CANCER-RELATED FATIGUE
KW - SELF-MANAGEMENT
KW - HODGKINS-LYMPHOMA
KW - PSYCHOLOGICAL DISTRESS
KW - QUALITY-OF-LIFE
KW - CLINICAL-PRACTICE
U2 - 10.2196/27886
DO - 10.2196/27886
M3 - Article
C2 - 34904948
SN - 1439-4456
VL - 23
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
IS - 12
M1 - e27886
ER -