Using the patient perspective to personalize psycho-oncological care for chronic cancer-related fatigue

Tom I Bootsma

Research output: ThesisDoctoral Thesis

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Abstract

Ongeveer een kwart van alle mensen met kanker ervaart chronische kanker-gerelateerde vermoeidheid (CKV) nadat de behandeling voor kanker is afgerond. Patiënten met CKV worden beperkt in hun dagelijkse activiteiten. Eerder onderzoek naar CKV richtte zich vooral op vrouwen met borstkanker tijdens de behandeling voor kanker en niet-helpende factoren van CKV. Ook werd in grote groepen onderzoek gedaan naar effectiviteit van psychosociale behandelingen voor CKV. Er is echter nog onvoldoende bekend over welke behandeling het beste werkt voor wie.

Om dit te onderzoeken, werd in dit proefschrift onderzoek uitgevoerd bij het Helen Dowling Instituut naar ervaringen van het individu met CKV. Als eerste werd een overkoepelend overzicht gemaakt van zestien studies naar ervaringen en omgaan met CKV. Hieruit kwam naar voren dat het lichaam centraal staat in hoe patiënten CKV ervaren en ermee omgaan. Ook werden interviews afgenomen bij een diverse groep van 25 mensen met ernstige CKV om meer inzicht te krijgen in hoe CKV in het lichaam ervaren wordt. Deze mensen hadden verschillende vormen van kanker en kregen hiervoor verschillende behandelingen. De onzichtbaarheid van CKV en het chronisch vermoeide lichaam stonden vaak op een negatieve manier op de voorgrond, waardoor dagelijkse en sociale activiteiten niet langer mogelijk waren om te kunnen doen. Verder werd tijdens de interviews ook gevraagd naar wat kan helpen bij het omgaan met CKV, waarbij het vormen van nieuwe helpende gewoontes en acceptatie van CKV belangrijk bleek.

De netwerkbenadering kijkt naar relaties tussen verschillende relevante factoren. Hierdoor is het mogelijk om met intensieve longitudinale dataverzameling binnen het individu te onderzoeken hoe het netwerk van factoren en CKV eruitziet voor die persoon. Door met behulp van netwerkanalyses te kijken naar het individuele netwerk, wordt inzicht verkregen in wat voor die persoon helpende en minder helpende factoren zijn en kan de behandeling daarop afgestemd worden. In een proof-of-concept studie werd deze netwerkbenadering toegepast en alle ervaringskennis, therapeutische ervaring en eerder onderzoek naar groepen patiënten met CKV samengebracht. Er werden 24 vragen over symptomen, emoties, helpende en niet-helpende manieren van omgaan met CKV en context geprogrammeerd als ‘Ecological Momentary Assessment’ (EMA)-app Energie InZicht.

Vijf patiënten met als hoofdprobleem CKV op de wachtlijst voor psycho-oncologische zorg bij het Helen Dowling Instituut kregen vijf keer per dag gedurende drie weken op hun mobiele telefoon deze vragen in de app Energie InZicht voorgelegd. In een casestudie werd door één deelnemer de studieduur verlengd naar 101 dagen. Bij start van de psycho-oncologische zorg ontvingen alle deelnemers gepersonaliseerde feedback in de vorm van netwerken op basis van de verzamelde EMA-data die ze bespraken met hun therapeut om er samen betekenis aan te geven.

Na uitgebreide evaluatie met patiënten en therapeuten, lijkt het gebruik van de EMA-dataverzameling met de app Energie InZicht tijdens de wachtlijst gevolgd door gepersonaliseerde netwerkfeedback bruikbaar en haalbaar om psycho-oncologische zorg op maat aan te bieden. Dit zou de gedeelde besluitvorming over de behandelrichting en het hoofddoel van de behandeling bij start van de psycho-oncologische zorg kunnen vergemakkelijken. Het is belangrijk om het ontwikkelen van gepersonaliseerde feedback te automatiseren. Daarnaast therapeuten te trainen in het bespreken van de netwerken en patiënt en therapeut eerst kennis te laten maken, zodat de terugkoppeling van de feedback optimaal is. Toekomstig onderzoek kan onderzoeken of het gebruik van de EMA-app Energie InZicht effectief is en ook zorgt voor een kortere behandelduur.

SUMMARY ENGLISH
Principal findings In this thesis, I explored the patient perspective on CCRF. I used idiographic and phenomenological methodologies to investigate how patients experience and respond to CCRF. This experiential knowledge of CCRF combined with network theory applied to EMA data are used to find an answer to the central research question: in what way(s) can we personalize psycho-oncological care for patients with CCRF? In the following paragraphs, I summarize the findings of five studies. The summary is followed by a critical reflection on the main results of this thesis to put them in a broader context, a discussion of the methodological strengths and limitations of the presented idiographic research, and an outline of the recommendations for clinical psycho-oncological practice and future research. Chapter 2: Experiencing and responding to chronic cancer-related fatigue: A metaethnography of qualitative research Chapter 2 consists of a meta-ethnography of qualitative studies, which included patients who suffered from CCRF. The aim of this meta-ethnography was to create an overarching interpretative narrative that focused on how patients’ experience and respond to CCRF. I performed a comprehensive systematic literature search. Of the 1178 selected studies, I included sixteen qualitative studies after deduplication and abstract and full-text screening. These studies included 705 patients (majority women) with different ages, cancer types (mainly breast cancer), stages, and (phase of) treatment(s). The quality of the included studies was variable according to the appraisal with the CASP criteria for qualitative research.1 I followed the seven phases of meta-ethnography first described by Noblit and Hare to extract and translate the first-order constructs (patients’ interpretations) and second-order constructs (authors’ interpretations) from the studies and synthesize these into third-order constructs (new interpretations).2 This interpretative qualitative review that focused on how patients experience and respond to CCRF showed an embodied structure of CCRF. I developed a figure of embodied CCRF (see figure 2 in Chapter 2) that consists of six interrelated third-order constructs with social, spatial and temporal dimensions: 1. Embodied experience: the negative awareness of the body; 2. (Mis)Recognition: the lack of recognition by patients, relatives and health professionals (social dimension);3. Small horizon: a narrowed world perspective (spatial dimension); 4. Role change: adopting other life roles (social dimension); 5. Loss of self: the impact on identity (temporal dimension); 6. Regaining one’s footing: the process of responding to CCRF by struggling, adapting and accepting (temporal dimension). These findings can help health professionals to recognize CCRF and take a person-centered approach. My first impression from psycho-oncological care practice is that the figure can be used as a tool to facilitate the communication between patients and health professionals. This can lead to recognition and normalization of the central problems, which can help patients to regain a sense of control. Chapter 3: Navigating severe chronic cancer-related fatigue: An interpretative phenomenological analysis In Chapter 3, I conducted semi-structured face-to-face interviews with adult participants who suffered from severe CCRF for at least three months after completion of cancer treatment. The purposively selected sample included a homogeneous sample of 25 participants. The aim of this interview study was to better understand the lived experiences of patients with severe CCRF. In this interview study, I used a theoretical framework of philosophical phenomenology to explore how patients with CCRF experience disruptions in embodiment, time, and space and how these are related.3–5 For qualitative analysis of the interviews, I followed the six steps of the IPA method of Smith.6 After discussion with our multidisciplinary research team, I identified four interrelated themes that expressed different dimensions of the embodied experience of CCRF: 1. Worn out: how CCRF is an overwhelming dynamic experience with different sensations (i.e., physical, emotional, sensory, and cognitive) in one’s body (e.g., limbs and/or mind), and could result in a loss of self (affective dimension); 2. Diminishment of one’s “I can”: how time and space to move ‘freely’ is restricted by the bodily experience of CCRF and impairs one’s activities and social life (functional dimension); 3. Invisibility: how the body with CCRF becomes an object within a social context because others cannot see CCRF (social and material dimension); 4. Regaining one’s “I can”: how one can adapt active time and movement in space to the embodied experience of CCRF, one’s limitations in functioning, and objectification of one’s body in a social context (functional and productive dimension).This phenomenological interview study showed that experiencing CCRF is a personal, complex, and dynamic process that consists of interconnected affective, social, material, functional, and productive dimensions. Chapter 4: Forming new habits in the face of chronic cancer-related fatigue: An interpretative phenomenological study In Chapter 4, I used the same interview sample of 25 participants with severe CCRF from Chapter 3 and focused on the question of what is helpful in responding to CCRF to facilitate adaptation. I followed the six steps of the IPA method of Smith:6 I identified five interrelated themes of the dynamic and mutually reinforcing habitual process of responding to CCRF: 1. Discovering physical and emotional boundaries: a learning process of selfmonitoring focused on how one’s body feels to protect boundaries and prevent exhaustion; 2. Communicating support needs: ways of searching for information and asking for (professional) help; 3. Reorganizing and planning activities and rest: finding a new way to balance activities and rest in one’s life; 4. Letting go of one’s habitual identity: stopping with old habits and changing one’s role into a less active person; 5. Recognizing and accepting CCRF: how the formation of new habitual ways to respond to CCRF creates room for new beliefs such as acceptance of one’s CCRF. This phenomenological interview study provided insight into what is helpful while responding to CCRF. In this process of habit formation, breaking with unhelpful habits and negative beliefs is essential. Chapter 5: Using smartphone-based ecological momentary assessment and personalized feedback for patients with chronic cancer-related fatigue: A proof-of-concept study A quantitative form of idiographic research is ecological momentary assessment (EMA), also called the experience sampling method. EMA is a structured diary technique, in which a participant receives questions (e.g., symptoms, affect, behavior) multiple times a day for multiple days on end in their daily living environment.7 Based on the findings from chapters 2-4 described above and from the perspective of the network theory as introduced in the first chapter, together with my colleagues, I developed the Energy InSight app, an EMA app specifically targeted at assessing CCRF idiographic as interrelated phenomenon. In Chapter 5, I conducted a proof-of-concept study implemented in routine psychooncological care with five participants on the waitlist for psychological treatment for severe CCRF and their therapists. Participants completed EMA questions (i.e., fatigue, mood, activity, coping with CCRF, and context) of the Energy InSight app on their mobile phone five times a day for a three-week period. In the following week they received personalized descriptive feedback from the researcher and during the first session with their therapist they discussed the network feedback together. The aims were to explore 1) to what extent and how a patient gained insight into CCRF by filling in the smartphone-based EMA and receiving personalized (network) feedback, and 2) how this insight can help patients and therapists improve the case conceptualization process in psycho-oncological care for CCRF. I used think-aloud interviews, semi-structured interviews, and observations to explore the user experiences of patients and their therapists. I performed inductive thematic analysis of the transcripts8. Based on patients’ and therapists’ experiences in this proof-of-concept study, using EMA data collection and discussing descriptive and network feedback seems feasible and usable to personalize and improve psycho-oncological care for CCRF. Patients’ experiences (N=5): The qualitative findings showed that using the EMA app (Energy InSight) for some patients resulted in negative reactions from others and increased the awareness of the body, (dis) abilities, and feelings. Using the EMA app (Energy InSight) and receiving the descriptive feedback report enabled for everyone visibility and acknowledgment of their main problem. The discussion of the descriptive and network feedback was emotionally confronting in a positive way for most patients. The descriptive and network feedback helped all patients to identify and recognize interrelated problems of CCRF. Using the EMA app (Energy InSight), followed by the descriptive feedback initiated for some patients a change in their behavior to respond to CCRF in helpful ways. The discussion of the network feedback report helped all patients to set treatment goals or change treatment direction. Therapists’ experiences (N=4): The qualitative findings demonstrated that some therapists reported limited use of the descriptive reports. Most therapists evaluated the network feedback as insightful, useful, and an accelerator in treatment to identify the main problems. However, exploring network associations and translating the findings to practical use in psycho-oncological care was challenging for all therapists. Chapter 6: Personalizing psychological care for chronic cancer-related fatigue: A case study on symptom dynamics In Chapter 6, I presented a case study to illustrate how feedback on person-specific networks can provide new insight into CCRF and how these insights can aid personalization of psychological treatment of CCRF. This case was part of the proof-of-concept study (Chapter 5). A 34-year-old woman with CCRF as her main problem was referred to a mental health institute for psycho-oncology. During the time on the waitlist, she completed the EMA questionnaire (Energy InSight) with 24 questions about fatigue, mood, activity, coping with fatigue, and context five times a day. She was willing to fill out the EMA app for 101 days. This allowed us to explore both moment-level and day-level partial (directed) correlation networks and to gain more insights into how symptom dynamics can change over time. The interplay between symptoms, cognitions and behavior was visualized in the personspecific moment-level and day-level networks, which were discussed with the patient. For example, accepting fatigue was an important node in the moment-level and day-level contemporaneous network. In the moment-level network, acceptance of fatigue in the last three hours had a connection with less hopelessness in the past three hours and less fatigue in the following moment. In the day-level contemporaneous network, acceptance was associated with less fatigue, less hopelessness, better mood, and more motivation to do things on the same day. The patient recognized this pattern. She explained that the unpredictability of CCRF can make her feel hopeless. These findings opened a dialogue with the patient about the importance of acceptance in responding to fatigue. She discussed these findings with her therapist. This case study demonstrated how symptom networks can provide insights into how to better respond to fatigue and might help to find a direction for treatment.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Tilburg University
Supervisors/Advisors
  • Slatman, Jenny, Promotor
  • van der Lee, M.L., Promotor, External person
  • Schellekens, M.P.J., Co-promotor, External person
  • van Os, J.J. , Member PhD commission, External person
  • Smeets, Tom, Member PhD commission
  • van Laarhoven, H.W.M., Member PhD commission, External person
  • de Boer, Marjolein, Member PhD commission
Award date15 Nov 2023
Publisher
Print ISBNs978-94-6483-132-0
Publication statusPublished - 15 Nov 2023

Keywords

  • Cancer-related fatigue
  • Personalized feedback

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