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Self-Management Support for Outpatients with Cancer Pain

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Self-Management Support for Outpatients with Cancer Pain Self-management support for outpatients with cancer pain Citation for published version (APA): Hochstenbach, L. M. J. (2017). Self-management support for outpatients with cancer pain: development, feasibility and impact of an eHealth intervention. Datawyse / Universitaire Pers Maastricht. https://doi.org/10.26481/dis.20170630lh Document status and date: Published: 01/01/2017 DOI: 10.26481/dis.20170630lh Document Version: Publisher's PDF, also known as Version of record Please check the document version of this publication: • A submitted manuscript is the version of the article upon submission and before peer-review. There can be important differences between the submitted version and the official published version of record. People interested in the research are advised to contact the author for the final version of the publication, or visit the DOI to the publisher's website. • The final author version and the galley proof are versions of the publication after peer review. • The final published version features the final layout of the paper including the volume, issue and page numbers. 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If the publication is distributed under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license above, please follow below link for the End User Agreement: www.umlib.nl/taverne-license Take down policy If you believe that this document breaches copyright please contact us at: [email protected] providing details and we will investigate your claim. Download date: 24 Sep. 2021 The research presented in this thesis was conducted at CAPHRI Care and Public Health Research Institute, Department of Health Services Research, of Maastricht University. CAPHRI participates in the Netherlands School of Primary Care Research CaRe. This research was funded by the Dutch Cancer Society (UM2011-5079). The two companies involved in the development of the eHealth intervention were: IDEE Maastricht UMC+ Universiteitssingel 50, 6229 ER Maastricht, the Netherlands www.idee-mumc.nl Sananet Care Rijksweg Zuid 37, 6131 AL Sittard, the Netherlands www.sananet.nl Lay-out: Tiny Wouters Cover: Gaston Vogel UMP Printing: Datawyse, Maastricht UNIVERSITAIRE ISBN: 978-94-6159-714-4 PERS MAASTRICHT © Laura Hochstenbach, Maastricht 2017 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 prior permission in writing by the author, or when appropriate, by the publishers of the publication. Self-management support for outpatients with cancer pain Development, feasibility, and impact of an eHealth intervention PROEFSCHRIFT ter verkrijging van de graad van doctor aan de Universiteit Maastricht, op gezag van de Rector Magnificus, Prof. dr. Rianne M. Letschert volgens het besluit van het College van Decanen, in het openbaar te verdedigen op vrijdag 30 juni 2017 om 12.00 uur door Laura Maria Josephina Hochstenbach Promotor Prof. dr. L.P. de Witte Copromotores Dr. S.M.G. Zwakhalen Dr. M.H.J. van den Beuken - van Everdingen Beoordelingscommissie Prof. dr. G.D.E.M. van der Weijden (voorzitter) Prof. dr. L.J. Boersma Dr. W.H. Oldenmenger (Erasmus MC Rotterdam) Prof. dr. S. Mawson (Sheffield University, United Kingdom) Prof. dr. D. Ruwaard Contents Chapter 1 General introduction 7 Chapter 2 Update on prevalence of pain in patients with cancer: 23 systematic review and meta-analysis Chapter 3 Co-creative development of an eHealth nursing intervention: 69 self-management support for outpatients with cancer pain Chapter 4 Feasibility of a mobile and web-based intervention to support 87 self-management in outpatients with cancer pain Chapter 5 Self-management support intervention to control cancer pain in 109 in the outpatient setting: a randomised controlled trial study protocol Chapter 6 Impact evaluation of an eHealth intervention to support 125 self-management in outpatients with cancer pain Chapter 7 General discussion 145 Summary 163 Samenvatting 171 Valorisation 177 Dankwoord 181 About the author 187 List of publications 189 1 General introduction Chapter 1 8 General introduction “Ineke, aged 62 years, is married and has three children. She was diagnosed with breast cancer two years ago for which she was treated with surgery, chemotherapy and adjuvant radiotherapy. Now she receives hormone therapy. Recently, during an outpatient consultation, she indicated to experience an increase in pain. She talked about pain in her rib bow that got worse while breathing. Based on extensive additional diagnostics, bone and liver metastasis were found. I suggested to start with second line chemotherapy and radiotherapy. I also prescribed low dose, long and short acting opioids.” Obviously, Ineke was shocked about the bad news. The palliative care team was contacted and a nurse consultant visited Ineke at home. Perspective of the oncologist Cancer pain Cancer The incidence of cancer is on the rise. Recent figures of the Dutch cancer registry show 108,400 new cases of cancer in 2016 (Figure 1.1)[1,2]. Due to advancements in early detection and more effective treatments, the chances of survival are increasing as well. As a consequence of these more effective and more invasive treatments, patients experience adverse side effects that have an enormous impact on daily functioning and quality of life [3]. Side effects can be physical (e.g. hair loss), psychological (e.g. anxiety) or social (e.g. inability to work). In addition, these effects can be characterised as short-term effects that often disappear after treatment (e.g. nausea), long-term effects that are persistent (e.g. fatigue), or late effects that occur months or even years after the end of treatment (e.g. heart disease) [4-6]. The assessment and management of these symptoms receive more and more attention. Pain Cancer is associated with pain and for many patients an important source of concern. Although not all patients necessarily experience pain, pain is frequently reported. Pain prevalence rates are 39.3% after curative treatment; 55.0% during anti-cancer treatment; and 66.4% in advanced disease. Of all patients 38.0% reports moderate to severe pain [7]. Cancer pain is classified as nociceptive or neuropathic pain. Nociceptive pain is caused by tissue damage. Neuropathic pain results from damage to the peripheral or central nervous system. Pain is nociceptive in 50%, neuropathic in less than 10%, and both nociceptive and neuropathic in 40-50% of patients with cancer [8]. Pain is caused by direct growth of the tumour or metastases (70%), by treatment (20%) or by other factors (10%) [8]. About one-third of patients in pain experience pain at a single site, one-third at two sites, and one-third at three or more 9 Chapter 1 sites [9]. Cancer pain is characterised by variations in pain intensity. Patients usually experience a continuous and average level of pain that is alternated with breakthrough pain, both spontaneously, unrelated to anything, and predictably related to moving, washing, or wound care [10]. Figure 1.1 Most common cancer localisations in 2016 [1] Care as usual for patients with cancer pain Concept of pain The International Association for the Study of Pain (IASP) defines pain as ‘an unpleasant sensory and emotional experience associated with actual or potential damage, or described in terms of such damage’ [11]. ‘Pain is what the person experiencing it says that it is, and is present when he says that it is present’ is a more pragmatic definition [12]. In this regard pain is more than a physical disorder and emphasises the subjective experience of patients. Pain influences psychological and social functioning. Conversely, psychological and social functioning affect pain. In this context, the model of Loeser includes four dimensions of pain (Figure 1.2) [13]. Nociception relates to the tissue or nerve damage. Pain corresponds to the perception or the sensation of pain. Suffering concerns the unpleasant emotional response. Pain behaviour occurs in the social context. In line with this model, the model of Saunders 10 General introduction differentiates between four dimensions of pain (Figure 1.3) [14]. Physically, the cancer or its treatment causes pain. Psychologically, pain is the result of feelings of frustration, anxiety, and hopelessness. Socially, losing work, family, societal, and social roles generates pain. Spiritually, pain is due to not finding meaning and fear for the unknown. All these dimensions influence one another and together constitute the ‘total pain’ as experienced by patients. In the end, the most important question is what pain means to the individual patient. Obviously, thorough pain assessment is crucial in determining the appropriate diagnosis and formulating a proper treatment plan. Assessment of pain A differentiation is made between unidimensional and multidimensional pain assessments [15]. A unidimensional pain assessment focuses only on pain severity [16]. Pain severity is the primary factor determining the impact of pain on the patient and the urgency of the treatment process. Simple pain scales, like a numerical rating scale (NRS), a Visual Analogue Scale (VAS) or a Verbal Rating Scale (VRS), make it possible to assess pain on each outpatient consultation [17]. Patients, for instance, can score their pain on an NRS 0-10, 0 indicating no pain and 10 representing the worst pain imaginable. Although general consensus about specific cut-off points is lacking, mild (NRS 1-3), moderate (NRS 4-6) and severe (NRS 7-10) pain are often discriminated [18].
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