“Am I normal?” The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers

Oerlemans, Simone; Arts, Lindy Paulina Johanna; Horevoorts, Nicole; Poll-Franse, Lonneke V van de

doi:10.2196/jmir.7079

Cited by 26 publications

(22 citation statements)

References 40 publications

(44 reference statements)

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“…Rates of compliance to the HRQOL questionnaires of 58% were achieved. This rate of compliance is within the range of 50-82% observed in other studies of HRQOL in lymphoma (Holzner et al, 2004;Mols et al, 2007;Holland et al, 2016;Oerlemans et al, 2017), albeit at the lower end of the scale. In view of these low compliance rates to the HRQOL questionnaires, subjective and observable TEAEs were also assessed by analysing the TEAE data collected using CTCAE criteria to provide supportive patient-reported data.…”

Section: Discussionsupporting

confidence: 82%

Lenalidomide maintenance for diffuse large B‐cell lymphoma patients responding to R‐CHOP: quality of life, dosing, and safety results from the randomised controlled REMARC study

Thiéblemont

Howlett²,

Casasnovas

et al. 2019

Br J Haematol

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Summary Lenalidomide maintenance therapy prolonged progression‐free survival (PFS) versus placebo in elderly patients with diffuse large B‐cell lymphoma (DLBCL) responding to induction chemotherapy in the phase 3 REMARC study. This subpopulation analysis assessed the impact of lenalidomide maintenance and treatment‐emergent adverse events (TEAEs) on health‐related quality of life (HRQOL). Global health status (GHS), and physical functioning and fatigue subscales were evaluated in patients who completed the European Organisation for Research and Treatment of Cancer quality‐of‐life questionnaire‐C30 v3.0. The impact of TEAEs classified post hoc as subjective (patients can feel) or observable (only measurable by physicians) on dose reductions and discontinuations was assessed. Among 457 patients (lenalidomide, n = 229; placebo, n = 228), mean (standard deviation) GHS was similar between treatment arms [68·2 (20·7) Versus 72·0 (17·8)] at randomisation and remained similar during maintenance. Patients receiving lenalidomide experienced no meaningful changes in GHS, physical functioning, or fatigue. Observable TEAEs were more common (81·1% Versus 66·3%) and more likely to lead to dose reductions, than subjective TEAEs in both arms. PFS was superior in the lenalidomide arm regardless of dose reduction. Lenalidomide maintenance prolonged PFS and did not negatively impact HRQOL in patients with DLBCL despite TEAEs being more common, when compared with placebo.

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Section: Discussionsupporting

confidence: 82%

Lenalidomide maintenance for diffuse large B‐cell lymphoma patients responding to R‐CHOP: quality of life, dosing, and safety results from the randomised controlled REMARC study

Thiéblemont

Howlett²,

Casasnovas

et al. 2019

Br J Haematol

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“…Recent developments in the integration of PROs in daily clinical practice to monitor patient’s symptoms and HRQoL show high participation rates [ 31 , 32 ]. Further, providing feedback to patients on their PROs may increase patients’ willingness to participate in PRO research [ 33 ].…”

Section: Discussionmentioning

confidence: 99%

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry

et al. 2018

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PurposeThe ‘Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship’ (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.MethodsBetween 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively.ResultsParticipants had a significantly better survival compared to non-participants (HR = 1.47, P < .01). Participation was associated with male gender, being 60–70 years old, high socio-economic status, receiving any treatment, receiving radiotherapy, having no comorbidities, and a cancer diagnosis 2–3 years before invitation. Sensitivity analysis demonstrates that the health-related quality of life (HRQoL) might be up to 1.3 points lower (scale 0–100) using hot deck imputation compared to non-imputed participant data.ConclusionsCancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes.

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“…Screening tools for psychological distress can be useful for its better recognition. In addition, providing feedback to survivors on their patient‐reported outcomes can help them to monitor their functioning and symptoms and may help to empower them to discuss their symptoms with a GP or medical specialist …”

Section: Discussionmentioning

confidence: 99%

“…In addition, providing feedback to survivors on their patient-reported outcomes can help them to monitor their functioning and symptoms and may help to empower them to discuss their symptoms with a GP or medical specialist. 48 Because survivors with psychological distress may be unwilling to visit a mental health care professional, it is important to offer help in a way that is acceptable to them, without increasing the overall use of resources. In addition, the treatment of psychological distress has to be widely applicable because the number of distressed survivors continues to grow.…”

Section: Discussionmentioning

confidence: 99%

More frequent use of health care services among distressed compared with nondistressed survivors of lymphoma and chronic lymphocytic leukemia: Results from the population‐based PROFILES registry

Arts

Oerlemans

Tick

et al. 2018

Cancer

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BACKGROUNDFollow‐up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects these survivors may experience as a result of their cancer and treatment have led to more pressure being placed on health care services. The objectives of the current study were to: 1) compare the use of medical care services by survivors with that of a normative population; 2) evaluate the use of medical and psychosocial care services among distressed and nondistressed survivors; and 3) identify associated sociodemographic and clinical factors.METHODSSurvivors of lymphoma and CLL diagnosed between 1999 and 2012 were selected via the population‐based Netherlands Cancer Registry and completed the Hospital Anxiety and Depression Scale questionnaire and questions regarding health care. Outcomes were compared with an age‐matched and sex‐matched normative population.RESULTSA total of 1444 survivors responded (69%). Survivors of lymphoma and CLL contacted their general practitioner (3.8 vs 2.3; P<.001) and medical specialist (5.7 vs 1.6; P<.001) more often within the last year compared with a normative population. In addition, psychologically distressed survivors had even more medical contacts and received psychosocial care more often compared with nondistressed survivors. In addition to psychological distress, comorbidity, female sex, and older age were found to be associated with a greater use of medical services, whereas younger age was associated with receiving psychosocial care.CONCLUSIONSSurvivors of lymphoma and CLL, especially those who are psychologically distressed, report an increased use of health care services compared with a normative population. Further studies are needed to explore whether the use of widely applicable psychosocial interventions could reduce the frequency of medical contacts. Cancer 2018;124:3016‐24. © 2018 Netherlands Comprehensive Cancer Organisation. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

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“Am I normal?” The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers

Cited by 26 publications

References 40 publications

Lenalidomide maintenance for diffuse large B‐cell lymphoma patients responding to R‐CHOP: quality of life, dosing, and safety results from the randomised controlled REMARC study

Lenalidomide maintenance for diffuse large B‐cell lymphoma patients responding to R‐CHOP: quality of life, dosing, and safety results from the randomised controlled REMARC study

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry

More frequent use of health care services among distressed compared with nondistressed survivors of lymphoma and chronic lymphocytic leukemia: Results from the population‐based PROFILES registry

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