eHealth to support survivors cancer eHealth to support cancer survivors Development, implementation and evaluation of an interactive portal The end Wilma Kui jpers Wilma Kui jpers eHEALTH TO SUPPORT CANCER SURVIVORS DEVELOPMENT, IMPLEMENTATION AND EVALUATION OF AN INTERACTIVE PORTAL Wilma Kui jpers Address of correspondence Wilma Kuijpers Zamenhof 20 1961 GL Heemskerk, the Netherlands [email protected] +31 (0)6 22 15 77 82 © Copyright 2015: Wilma Kuijpers, the Netherlands All rights reserved. No part of this thesis may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or any information storage or retrieval system, without permission in writing from the author, or, when appropriate, from the publishers of the publications. ISBN: 978-90-365-4031-5 Department Health Technology and Services Research, University of Twente, HSS 16-011, ISSN 1878-4968 Cover design and layout: Rachel van Esschoten, DivingDuck Design (www.divingduckdesign.nl) Printing: Gildeprint Drukkerijen, Enschede The studies in this thesis were financially supported by a grant from Alpe d’Huzes (KWF 2010- 4584) The printing of this thesis was supported by The Netherlands Cancer Institute and ChipSoft. eHEALTH TO SUPPORT CANCER SURVIVORS DEVELOPMENT, IMPLEMENTATION AND EVALUATION OF AN INTERACTIVE PORTAL PROEFSCHRIFT ter verkrijging van de graad van doctor aan de Universiteit Twente, op gezag van de rector magnificus, prof. dr. H. Brinksma, volgens besluit van het College voor Promoties in het openbaar te verdedigen op vrijdag 4 maart 2016 om 12.45 uur door Wilma Kuijpers geboren op 7 december 1984 te Beverwijk Dit proefschrift is goedgekeurd door de promotoren: Prof. dr. Wim H van Harten Prof. dr. Neil K Aaronson en de copromotor: Dr. Wim G Groen Samenstelling promotiecommissie: Voorzitter en secretaris Prof. dr. Th.A.J. Toonen Universiteit Twente Promotoren Prof. dr. WH van Harten Universiteit Twente Prof. dr. NK Aaronson Antoni van Leeuwenhoek Co-promotor Dr. WG Groen Antoni van Leeuwenhoek Beoordelingscommissie Prof. dr. JWEC van Gemert – Pijnen Universiteit Twente Dr. RPMG Hermens IQ Healthcare Nijmegen Prof. dr. JAM Kremer Radboud UMC Nijmegen Prof. dr. LV van de Poll – Franse Universiteit van Tilburg Prof. dr. MMR Vollenbroek – Hutten Universiteit Twente Prof. dr. LP de Witte Universiteit Maastricht CONTENTS Chapter 1 General introduction . 9 Chapter 2 Empowerment of cancer survivors through information technology: An integrative review . 21 Chapter 3 A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: Relevance for cancer survivors . .55 Chapter 4 An interactive portal to empower cancer survivors: A qualitative study on user expectations . 85 Chapter 5 Development of MijnAVL, an interactive portal to empower breast and lung cancer survivors: An iterative, multi-stakeholder approach . .101 Chapter 6 Patients’ and health professionals’ understanding of and preferences for graphical presentation styles for individual level EORTC QLQ-C30 scores . .121 Chapter 7 eHealth for breast cancer survivors: Feasibility and preliminary evidence on the efficacy of an interactive portal . .141 Chapter 8 Supporting lung cancer patients by eHealth: A pilot study of the feasibility, use and impact of an interactive portal . 157 Chapter 9 General discussion . 167 Chapter 10 Summary . 185 Nederlandse samenvatting (Summary in Dutch) . 191 Dankwoord (Acknowledgments) . .199 List of publications . .205 About the author . 209 Chapter 1 Chapter General introduction Chapter 1 Cancer survivors Due to advancements in the early detection, diagnosis and treatment of cancer, along 1 with the ageing population, the number of cancer survivors is increasing rapidly [1]. In the Netherlands, numbers are expected to increase from 420.000 in 2009 up to 660.000 individuals in 2020 [2]. Over the years there has been debate about who should be considered a cancer survivor and different definitions have been presented [3]. According to the National Coalition for Cancer Survivorship (NCCS), individuals are a cancer survivor from the moment of diagnosis through the balance of life [4]. This implies that individuals undergoing treatment (usually referred to as cancer patients) are also seen as cancer survivors, which was also suggested by the Institute of Medicine (IOM) in their report “From cancer patient to cancer survivor: Lost in transition” [5]. The National Cancer Institute (NCI) has adapted and expanded the definition of the NCCS by also including family, friends and caregivers [6]. In contrast, the Survivorship Task Force of the European Organisation of Research and Treatment of Cancer (EORTC) has defined a cancer survivor as an individual who has completed his or her primary treatment for cancer and is currently disease-free [7]. We will adhere to the definition of the NCCS in this thesis, which implies that we refer to individuals both during and after treatment when we use the term cancer survivor. As the majority (62%) of cancer survivors live at least 5 years after diagnosis (“long-term”) [2], with cancer therapies health professionals not only try to maximize cure but also to minimize side effects of treatments [8]. Nevertheless, many survivors suffer from short- term, long-term and/or late effects caused by the cancer itself or cancer treatment, and can therefore be seen as individuals with a chronic disease. These effects can be physical or psychosocial and are likely to have an impact on health status and quality of life [5]. Short-term effects occur during treatment and include, for example, nausea and vomiting, hair loss, pain, and dyspnea; these effects often disappear after treatment completion. Long-term effects refer to side effects of cancer treatment that are persistent, such as pain, fatigue, and anxiety and sexual problems. Late effects emerge months or even years after the end of treatment. Besides an increased risk of cancer recurrence and second malignancies, late effects include, for example, cardiovascular disease, fibrosis, peripheral neuropathy, and cognitive deficits. Cancer survivorship care Survivorship care is becoming increasingly important for supporting cancer survivors in coping with these effects. It includes the palliation of persisting symptoms, the prevention of late effects of treatment or second cancers, and health promotion to maximize health status [8]. For palliation, prevention and health promotion, the provision of relevant information is important. The majority of cancer survivors have strong information needs regarding their diagnosis, treatment, rehabilitation and (late) effects [9; 10]. More specifically, they would like to know as much as possible about the characteristics of their disease, the course of treatment, the possible occurrence of (late) effects and what to 10 General introduction do to prevent or overcome them, what their follow-up schedule is and how to develop and maintain a healthy lifestyle. Information needs differ across the cancer trajectory and across people from different age, sex, educational level, ethnicity and stage of 1 disease [11]. As fulfilled information needs are related to satisfaction with care [12], and sometimes even to a better quality of life [13], it is important to provide survivors with information that fits their individual characteristics, preferences and needs to as great an extent as possible. Many of the short-term, long-term and late effects of cancer and its treatment have a physical component, which makes it increasingly important to adopt a healthy lifestyle in order to maximize health status. Being sufficiently physically active is especially important. A large number of studies have investigated the effects of interventions aimed at stimulating physical activity in cancer survivors both during and after treatment. In general, these studies have found positive effects on physical and psychosocial well- being, including improved physiology and body composition, less fatigue, improved psychological outcomes, better overall health-related quality of life and improvements in specific quality of life domains [14-19]. For breast, colon and prostate cancer, even a reduced risk of cancer recurrence has been reported [20; 21]. Despite these benefits, physical activity norms recommending 150 minutes of moderate intensity, 75 minutes of vigorous intensity or a comparable combination of these two per week [22] are not met by many cancer survivors [23; 24]. Barriers for being sufficiently physically active include health- or treatment related factors (e.g., illness, fatigue, nausea, pain, weakness), environmental factors (e.g., lack of equipment, lack of facilities, weather circumstances, family responsibilities) and personal factors (e.g., no interest, lack of self-discipline, lack of enjoyment, no motivation)[25-27]. It is important to help survivors to overcome these barriers so that they can engage regularly in physical activity. In this regard it is appropriate to provide relevant information and advice that take into account individual characteristics, needs and preferences. Another important factor in managing the (late) effects of cancer and its treatment is the regular screening for physical and psychosocial symptoms. In part, this can be done with questionnaires in which cancer survivors report about their health status: patient-reported outcomes (PROs). PROs can provide health professionals with information about the symptoms and subjective well-being of