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151. Persistent symptoms of fatigue, neuropathy and role‐functioning impairment among indolent non‐Hodgkin lymphoma survivors: A longitudinal PROFILES registry study.

Author

Ekels, Afke, van de Poll‐Franse, Lonneke V., Posthuma, Eduardus F. M., Kieffer, Jacobien, Issa, Djamila E., Koster, Adrianus, Nijziel, Marten R., Pruijt, Johannes H. F. M., Stevens, Wendy B. C., Tick, Lidwine W., and Oerlemans, Simone

Subjects
*NON-Hodgkin's lymphoma, *PSYCHOLOGICAL factors, *SYMPTOMS, *WATCHFUL waiting, *NEUROPATHY, *CANCER fatigue
Abstract

Summary: Little is known about the long‐term health‐related quality of life (HRQoL) and persistence of symptoms among patients with indolent non‐Hodgkin lymphoma (iNHL). This large population‐based longitudinal study therefore investigated the long‐term HRQoL and persistence of symptoms and identified associated sociodemographic, clinical and psychological factors. Patients diagnosed between 1999 and 2014 and four or more months after diagnosis were invited to participate in a longitudinal survey. Sociodemographic and clinical data were obtained from the Netherlands Cancer Registry. The EORTC QLQ‐C30 and CLL‐16 were completed by 669 patients (74% response rate). Patients completed on average four questionnaires. Primary treatment was active surveillance (52%), systemic therapy (31%) or radiotherapy (13%). Respectively, 36% reported persistent fatigue, 33% persistent neuropathy and 25% persistent role‐functioning impairment. This was 2–3 times higher than in the age‐ and sex‐matched normative population. Up to 10 years after diagnosis, scores remained relatively stable without clinically relevant changes. Comorbidities, psychological distress, shorter time since diagnosis, systemic therapy, younger age, education level and having no partner were associated with worse outcomes (all ps < 0.05). Up to a third of patients with iNHL experience long‐term persistent symptoms which do not improve over time. Early recognition of symptoms will help in providing tailored supportive care for those in need. [ABSTRACT FROM AUTHOR]

Published
2022
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152. Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

Author

Poll-Franse, Lonneke V van de, Horevoorts, Nicole, Schoormans, Dounya, Beijer, Sandra, Ezendam, Nicole P M, Husson, Olga, Oerlemans, Simone, Schagen, Sanne B, Hageman, Geja J, Deun, Katrijn Van, van den Hurk, Corina, Eenbergen, Mies van, Mols, Floortje, Group, the PROFILES Registry, van de Poll-Franse, Lonneke V, Van Deun, Katrijn, van Eenbergen, Mies, and PROFILES Registry Group

Subjects
TUMOR treatment, ACQUISITION of data, RESEARCH funding, TUMORS, HEALTH promotion
Abstract

To take cancer survivorship research to the next level, it's important to gain insight in trajectories of changing patient-reported outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection-like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health. [ABSTRACT FROM AUTHOR]

Published
2022
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153. Estimating VO2peak in 18–90 Year-Old Adults: Development and Validation of the FitMáx©-Questionnaire.

Author

Meijer, Renske, van Hooff, Martijn, Papen-Botterhuis, Nicole E, Molenaar, Charlotte JL, Regis, Marta, Timmers, Thomas, van de Poll-Franse, Lonneke V, Savelberg, Hans HCM, and Schep, Goof

Subjects
ADULT development, EXERCISE tests, CARDIOPULMONARY fitness, STAIR climbing
Abstract

Purpose: Cardiorespiratory fitness (CRF) plays an essential role in health outcomes and quality of life. However, it is often not assessed nor estimated. Objective CRF assessment is costly, labour intensive and not widely available. Patient-reported outcome measures estimate CRF more cost-efficiently, but current questionnaires lack accuracy. The aim of this study is to develop a new self-reported questionnaire to estimate CRF. Materials and Methods: The FitMáx©-questionnaire, consisting of only three questions assessing walking, stair climbing, and cycling capacity, was compared with the commonly used Duke Activity Status Index (DASI) and Veterans Specific Activity Questionnaire (VSAQ). These questionnaires were compared to peak oxygen uptake (VO2peak) as measured with cardiopulmonary exercise testing. This study included 759 cardiac, pulmonary and oncologic patients and healthy persons aged 18‒90. Results: FitMáx© strongly correlated (r = 0.94 (0.92‒0.95) SEE = 4.14 mL∙kg− 1∙min− 1) with measured VO2peak. Bias between predicted and measured VO2peak was − 0.24 (− 9.23‒8.75; 95% limits of agreement) mL·kg− 1·min− 1. The FitMáx© scored superiorly on correlation and SEE compared with the DASI and VSAQ, r = 0.75 (0.68‒0.80) SEE = 4.62 mL∙kg− 1∙min− 1 and r = 0.87 (0.83‒0.90) SEE = 6.75 mL∙kg− 1∙min− 1, respectively. Conclusion: FitMáx© is a valid and accessible questionnaire to estimate CRF expressed as VO2peak in clinical practice and shows substantial improvement compared to currently used questionnaires. [ABSTRACT FROM AUTHOR]

Published
2022
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156. Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: Randomized Controlled Trial (Preprint)

Author

Oerlemans, Simone, primary, Arts, Lindy Paulina Johanna, additional, Kieffer, Jacobien M, additional, Prins, Judith, additional, Hoogendoorn, Mels, additional, van der Poel, Marjolein, additional, Koster, Ad, additional, Lensen, Chantal, additional, Stevens, Wendy Bernadina Catharina, additional, Issa, Djamila, additional, Pruijt, Johannes F M, additional, Oosterveld, Margriet, additional, van der Griend, René, additional, Nijziel, Marten, additional, Tick, Lidwine, additional, Posthuma, Eduardus F M, additional, and van de Poll-Franse, Lonneke V, additional

Published
2021
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158. Visualization formats of Patient-Reported Outcomes in clinical practice: a systematic review about preferences and interpretation accuracy. (Preprint)

Author

Albers, Elaine A. C., primary, Fraterman, Itske, additional, Walraven, Iris, additional, Wilthagen, Erica, additional, Schagen, Sanne B., additional, van der Ploeg, Iris M., additional, Wouters, Michel W.J.M., additional, van de Poll-Franse, Lonneke V., additional, and de Ligt, Kelly M., additional

Published
2021
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161. 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

Author

Arts, Lindy P. J., Oerlemans, Simone, Tick, Lidwine, Koster, Ad, Roerdink, Henk T. J., van de Poll‐Franse, Lonneke V., and Medical and Clinical Psychology

Subjects
INTERVIEW SURVEY, Adult, Male, FOLLOW-UP CARE, Lymphoma, psychosocial care, HOSPITAL ANXIETY, Patient Health Questionnaire, Discipline, Sex Factors, psychological distress, Cancer Survivors, chronic lymphocytic leukemia (CLL), BREAST-CANCER, Humans, NON-HODGKINS-LYMPHOMA, Registries, Aged, Netherlands, Psychosocial Oncology, Age Factors, B-CELL LYMPHOMA, survivors, Original Articles, Middle Aged, Patient Acceptance of Health Care, Leukemia, Lymphocytic, Chronic, B-Cell, DEPRESSION SCALE, DUTCH POPULATION, Quality of Life, Original Article, Female, health care use, Stress, Psychological, medical contacts
Abstract

BACKGROUND Follow‐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. METHODS Survivors 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. RESULTS A total of 1444 survivors responded (69%). Survivors of lymphoma and CLL contacted their general practitioner (3.8 vs 2.3; P, Follow‐up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects they may experience as a result of their cancer and treatment have increased pressure on health care services. Survivors of lymphoma and CLL, especially psychologically distressed survivors, report an increased use of health care services compared with a normative population without cancer.

Published
2018

167. Relationship Between Quality of Life and Survival in Patients With Pancreatic and Periampullary Cancer: A Multicenter Cohort Analysis

Author

Mackay, Tara M., primary, Latenstein, Anouk E.J., additional, Sprangers, Mirjam A.G., additional, van der Geest, Lydia G., additional, Creemers, Geert-Jan, additional, van Dieren, Susan, additional, de Groot, Jan-Willem B., additional, Groot Koerkamp, Bas, additional, de Hingh, Ignace H., additional, Homs, Marjolein Y.V., additional, de Jong, Evelien J.M., additional, Molenaar, I. Quintus, additional, Patijn, Gijs A., additional, van de Poll-Franse, Lonneke V., additional, van Santvoort, Hjalmar C., additional, de Vos-Geelen, Judith, additional, Wilmink, Johanna W., additional, van Eijck, Casper H., additional, Besselink, Marc G., additional, van Laarhoven, Hanneke W.M., additional, and _, _, additional

Published
2020
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177. The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study

Author

Soomers, Vicky L. M. N., primary, Desar, Ingrid M. E., additional, van de Poll-Franse, Lonneke V., additional, van de Sande, Michiel A. J. van de, additional, de Haan, Jacco J., additional, Verhoef, Cornelis, additional, Vriens, Ingeborg J. H., additional, van Houdt, Winan J., additional, Bonenkamp, Johannes J., additional, van der Graaf, Winette T. A. van der, additional, and Husson, Olga, additional

Published
2020
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178. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries

Author

Timbergen, Milea J. M., primary, van der Graaf, Winette T. A., additional, Grünhagen, Dirk J., additional, Younger, Eugenie, additional, Sleijfer, Stefan, additional, Dunlop, Alison, additional, Dean, Lucy, additional, Verhoef, Cornelis, additional, van de Poll-Franse, Lonneke V., additional, and Husson, Olga, additional

Published
2020
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179. Patient Satisfaction and Quality of Life Before and After Treatment of Pancreatic and Periampullary Cancer: A Prospective Multicenter Study

Author

Mackay, Tara M., primary, van Rijssen, Lennart B., additional, Andriessen, Jurr O., additional, Suker, Mustafa, additional, Creemers, Geert-Jan, additional, Eskens, Ferry A., additional, de Hingh, Ignace H., additional, van de Poll-Franse, Lonneke V., additional, Sprangers, Mirjam A.G., additional, Busch, Olivier R., additional, Wilmink, Johanna W., additional, van Eijck, Casper H., additional, Besselink, Marc G., additional, van Laarhoven, Hanneke W., additional, and _, _, additional

Published
2020
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181. Development of a Patient Centered Outcome Set for Patients With Multiple Myeloma to be Used in Clinical Practice

Author

Oerlemans, Simone, primary, Bennink, M. Christine, additional, Levin, Mark David, additional, Broijl, Annemiek, additional, Van der Klift, Marjolein, additional, Van Deursen, Judith, additional, Vogels, Daphne, additional, Van de Poll-Franse, Lonneke V., additional, Sonneveld, Pieter, additional, Hazelzet, Jan A., additional, and Tick, Lidwine W., additional

Published
2020
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199. Integrated analysis of pain, health-related quality of life, and analgesic use in patients with metastatic castration-resistant prostate cancer treated with Radium-223

Author

Badrising, Sushil K., Louhanepessy, Rebecca D., van der Noort, Vincent, Kieffer, Jacobien, Coenen, Jules L. L. M., Hamberg, Paul, Beeker, Aart, Wagenaar, Nils, Lam, Marnix, Celik, Filiz, Loosveld, Olaf J. L., Oostdijk, Ad, Zuetenhorst, Hanneke, de Feijter, Jeantine M., Dezentjé, Vincent O., Ras-van Spijk, Suzan, Vegt, Erik, Haanen, John B., van de Poll-Franse, Lonneke V., Zwart, Wilbert, and Bergman, Andries M.

Abstract

Background: Radium-223 (Ra-223), an alpha-emitting radiopharmaceutical, established an improved overall survival and health-related quality of life (HRQoL) in symptomatic metastatic castration-resistant prostate cancer (mCRPC) patients. However, effects on pain were not specifically evaluated. Here we assess integrated HRQoL, pain, and opioid use in a contemporary, more extensively pretreated, symptomatic and asymptomatic mCRPC population. Methods: mCRPC patients scheduled for Ra-223 treatment were included and analyzed for HRQoL, pain, and opioid use, using Functional Assessment of Cancer Therapy-Prostate (FACT-P) and Brief Pain Inventory-Short Form (BPI-SF) questionnaires and recording of opioid use and dosage, respectively. Primary outcome measure was the percentage of patients experiencing a complete pain response (score of 0 on the BPI-SF Worst pain item and no increase in daily use of analgesics). A complete or partial pain response (better BPI-SF score and decrease in opioid use) and a better or no change in HRQoL was evaluated as an integrated overall clinical response (IOCR). Secondary endpoints included the time to pain progression (TPP) and Total FACT-P deterioration (TTFD), defined as time from first Ra-223 treatment to clinical meaningful increase in BPI-SF Worst pain item score and Total FACT-P score, respectively. Results: This registry included 300 patients, of whom 105 (35%) were evaluable for FACT-P and BPI-SF during Ra-223 treatment. Forty-five (43%) patients had pain at baseline (PAB) (BPI-SF Worst pain score 5–10 points) and 60 (57%) had no pain at baseline (no-PAB) (BPI-SF Worst pain score 0–4 points). Complete pain response was achieved in 31.4% of the patients, while 58% had an IOCR. The median TTP and TTFD were 5.6 and 5.7 months, respectively, while the difference between PAB and no-PAB patients was not significant. Conclusions: In contemporary, extensively pretreated mCRPC patients, Ra-223 treatment induced complete pain responses while integrated analysis of HRQoL, pain response, and opioid use demonstrated that the majority of patients derive clinical benefit.

Published
2022
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200. Personalized response-directed surgery and adjuvant therapy after neoadjuvant ipilimumab and nivolumab in high-risk stage III melanoma: the PRADO trial

Author

Reijers, Irene L. M., Menzies, Alexander M., van Akkooi, Alexander C. J., Versluis, Judith M., van den Heuvel, Noëlle M. J., Saw, Robyn P. M., Pennington, Thomas E., Kapiteijn, Ellen, van der Veldt, Astrid A. M., Suijkerbuijk, Karijn P. M., Hospers, Geke A. P., Rozeman, Elisa A., Klop, Willem M. C., van Houdt, Winan J., Sikorska, Karolina, van der Hage, Jos A., Grünhagen, Dirk J., Wouters, Michel W., Witkamp, Arjen J., Zuur, Charlotte L., Lijnsvelt, Judith M., Torres Acosta, Alejandro, Grijpink-Ongering, Lindsay G., Gonzalez, Maria, Jóźwiak, Katarzyna, Bierman, Carolien, Shannon, Kerwin F., Ch’ng, Sydney, Colebatch, Andrew J., Spillane, Andrew J., Haanen, John B. A. G., Rawson, Robert V., van de Wiel, Bart A., van de Poll-Franse, Lonneke V., Scolyer, Richard A., Boekhout, Annelies H., Long, Georgina V., and Blank, Christian U.

Abstract

Neoadjuvant ipilimumab and nivolumab induces high pathologic response rates (pRRs) in clinical stage III nodal melanoma, and pathologic response is strongly associated with prolonged relapse-free survival (RFS). The PRADO extension cohort of the OpACIN-neo trial (NCT02977052) addressed the feasibility and effect on clinical outcome of using pathologic response after neoadjuvant ipilimumab and nivolumab as a criterion for further treatment personalization. In total, 99 patients with clinical stage IIIb–d nodal melanoma were included and treated with 6 weeks of neoadjuvant ipilimumab 1 mg kg−1and nivolumab 3 mg kg−1. In patients achieving major pathologic response (MPR, ≤10% viable tumor) in their index lymph node (ILN, the largest lymph node metastasis at baseline), therapeutic lymph node dissection (TLND) and adjuvant therapy were omitted. Patients with pathologic partial response (pPR; >10 to ≤50% viable tumor) underwent TLND only, whereas patients with pathologic non-response (pNR; >50% viable tumor) underwent TLND and adjuvant systemic therapy ± synchronous radiotherapy. Primary objectives were confirmation of pRR (ILN, at week 6) of the winner neoadjuvant combination scheme identified in OpACIN-neo; to investigate whether TLND can be safely omitted in patients achieving MPR; and to investigate whether RFS at 24 months can be improved for patients achieving pNR. ILN resection and ILN-response-tailored treatment were feasible. The pRR was 72%, including 61% MPR. Grade 3–4 toxicity within the first 12 weeks was observed in 22 (22%) patients. TLND was omitted in 59 of 60 patients with MPR, resulting in significantly lower surgical morbidity and better quality of life. The 24-month relapse-free survival and distant metastasis-free survival rates were 93% and 98% in patients with MPR, 64% and 64% in patients with pPR, and 71% and 76% in patients with pNR, respectively. These findings provide a strong rationale for randomized clinical trials testing response-directed treatment personalization after neoadjuvant ipilimumab and nivolumab.

Published
2022
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