What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study.

PURPOSE: Despite improved survival for people with advanced cancer due to new medical treatments, a growing group of long-term responders (LTRs) has to learn to live with uncertainties that affect several life domains. At the core of their experience, they neither feel like a patient nor feel healthy. Despite growing awareness of LTRs' experiences, learning more about how they cope with their long-term response can provide insight into how to best support them. Our study aimed to gain a deeper understanding what LTRs experience as helpful in navigating life with a long-term response. METHODS: We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 participants with advanced melanoma or lung cancer with confirmed response or long-term stable disease while on immuno- or targeted therapy. RESULTS: LTRs reported several strategies to navigate life with a long-term response, for example, by involving the social environment, seeing uncertainty as an opportunity, and being present in the moment. This helped them to reclaim a sense of control, alter their perspective, and reshape their lives according to their values. CONCLUSION: Using different coping strategies enables LTRs to acknowledge both their sick and healthy side. Striking a healthy balance between being oriented on feeling sick or feeling healthy can help LTRs and their close others to navigate life with a long-term response. Healthcare professionals can provide support by recognizing whether LTRs are oriented at feeling sick or healthy, and by actively involving close others during medical appointments.

A holistic profile for cancer-related fatigue for women with breast cancer - a qualitative study.

Objective: Cancer- related fatigue (CRF) is one of the most reported long-term effects after breast cancer and severely impacts quality of life. To come towards optimal treatment of multidimensional CRF, the first step is to use a holistic approach to develop a holistic patient profile including the patient's experience and impact of CRF on their life. Methods and measures: Four semi- structured focus groups with twenty- seven breast cancer patients and fourteen interviews with healthcare professionals (HCPs) were held. Reflexive thematic analysis was used to define (sub)themes for the holistic patient profile. The themes of the interviews and focus groups were compared for validity. Results: Breast cancer patients and HCPs described the same five major themes, consisting of experience of CRF, impact and consequences, coping, personality, and CRF treatment. Experience of CRF consists of cognitive, emotional, and physical aspects. Impact and consequences include work, family, partner relation, social contact and hobbies, body, and misunderstanding. Coping consists of twelve (mal)adaptive strategies. Personality and CRF treatment were summarised as themes. Conclusions: A first holistic patient profile was introduced for CRF for breast cancer. This profile can be conceptualized into a questionnaire to collect information for personalized treatment recommendations and monitoring of CRF over time.

A Web-Based Mindfulness-Based Cognitive Therapy for Couples Dealing With Chronic Cancer-Related Fatigue: Protocol for a Single-Arm Pilot Trial.

BACKGROUND: Chronic fatigue is a common symptom among patients who have been treated for cancer. Current psychosocial interventions typically target the patient alone, despite growing evidence suggesting that a couples' approach can increase and broaden the efficacy of an intervention. Therefore, based on an existing web-based mindfulness-based cognitive therapy for patients, the couple intervention COMPANION was developed. OBJECTIVE: The primary objectives of this study are to determine the acceptability of COMPANION and its potential efficacy in reducing fatigue in patients with cancer. Our secondary objectives are to examine the feasibility of the trial procedures and the potential working mechanisms of the couple intervention. METHODS: We will conduct a single-arm pilot trial for couples (ie, patients with cancer with chronic fatigue and their partners). All couples are allocated to the web-based couple intervention that consists of psychoeducation, mindfulness, and cognitive-behavioral exercises. The 9 sessions of the intervention are supervised remotely by a trained therapist. Patients and partners will complete questionnaires before starting the intervention (T0), 2 weeks after completing the intervention (T1), and 1 month after T1 (T2). They will also fill out weekly diaries during the intervention period. A subsample of patients (n≈5) and partners (n≈5) as well as all the therapists providing COMPANION will participate in the final focus groups. Benchmark values have been defined to determine the acceptability (ie, ≥60% of couples complete the intervention and/or ≥70% of the participants are satisfied with the intervention) and potential efficacy (ie, a significant improvement in fatigue and/or a clinically relevant improvement in fatigue in 45% of the patients between T0 and T1) of the intervention. The trial procedures are deemed feasible if an average of at least three couples are included per recruiting month and/or adherence to the assessments is at least 65% for T1 and the diaries and 60% for T2. To establish potential working mechanisms, changes in affect, sleep, catastrophizing, partner communication and interactions, self-efficacy, mindfulness, and closeness will be examined. Quantitative outcomes will be interpreted along with the results from the focus groups. RESULTS: Data collection is expected to be completed by March 2024. CONCLUSIONS: This pilot trial will test the first web-based mindfulness-based cognitive therapy for couples targeting chronic cancer-related fatigue. Findings will indicate whether proceeding with a randomized controlled trial is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT05636696; https://clinicaltrials.gov/study/NCT05636696. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48329.

Exploring the dynamic interconnectedness of protective and perpetuating factors of cancer-related fatigue.

OBJECTIVE: Approximately 25% of cancer patients suffer from cancer-related fatigue (CRF) after cancer treatment. CRF is a multi-factorial condition affected by several interrelated protective and perpetuating factors. As most studies merely assessed bivariate associations, more insight into the complex relationships among these constructs is needed. We applied the multivariate network approach to gain a better understanding of how patients' fatigue, perpetuating and protective factors are dynamically interconnected. METHOD: Between February and August 2022, 30 cancer patients filled out a carefully developed ecological momentary assessment questionnaire (EnergyInSight) five times a day for at least 21 days while being on the waitlist for psychological care for CRF. We performed a multi-level vector autoregression analysis to examine the interconnectedness among fatigue, protective factors (allowing rest, acceptance, and self-efficacy) and perpetuating factors (worrying, catastrophizing, and feeling guilty). RESULTS: In the contemporaneous network (concurrent associations), higher acceptance and self-efficacy were associated with lower fatigue, whereas all other factors were associated with higher fatigue. The strongest relationships were between worrying and feeling guilty and between acceptance and allowing rest. In the temporal network (lagged associations), fatigue was related to two factors: higher self-efficacy preceded lower fatigue, and higher fatigue preceded increased allowing rest. CONCLUSIONS: Taking all included factors into account, the networks identified self-efficacy and allowing rest as key protective factors of CRF. Patients may benefit from psychological interventions that cultivate self-efficacy, as it seems to pave the way to reduced fatigue.

Intensity of mental health treatment of cancer-related psychopathology: the predictive role of Early Maladaptive Schemas.

PURPOSE: With the limited availability of mental healthcare, it is of utmost importance to provide care that matches the needs of patients: short if possible, but also more intense when necessary. This study explored whether Early Maladaptive Schemas (EMSs) play a predictive role in the intensity of needed mental health treatment of cancer-related psychopathology. METHODS: EMSs were assessed before mental health treatment in 256 patients who sought help at a specialized mental health care centre for those affected by cancer in the Netherlands. Data about treatment indication and intensity of mental health treatment were collected. Univariate and multivariate logistic regression analysis were used to assess the predictive value of the EMSs total score and specific domains on treatment indication and treatment intensity. RESULTS: The presence of more severe EMSs predicted an indication for a more intense mental health treatment before start of the treatment, and actual more intense mental health treatment. The domain Impaired Autonomy and Performance appeared to be conceptually close to the domain Disconnection and Rejection, we left the latter out in our multivariate analysis and then found that Impaired Autonomy was the best predictor of intensity of mental health treatment. CONCLUSION: Our findings imply that assessing EMSs could help to identify patients who will receive more treatment time.

Navigating severe chronic cancer-related fatigue: an interpretative phenomenological analysis.

OBJECTIVE: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. DESIGN: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. MAIN OUTCOME MEASURES: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. RESULTS: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. CONCLUSION: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.

Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy.

PURPOSE: The introduction of immunotherapy and targeted therapy has drastically improved the life expectancy of patients with advanced cancer. Despite improved survival, obtaining long-term response can be highly distressing and comes with uncertainties that affect several life domains. The aim of this study is to gain a deeper understanding of long-term responders' lived experiences with obtaining long-term response to immunotherapy or targeted therapy. METHODS: We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 patients with advanced melanoma or lung cancer who had a confirmed response to or long-term stable disease while on immunotherapy or targeted therapy. RESULTS: Long-term responders are living in a twilight zone, where they neither feel like a patient, nor feel healthy. This impacts their self-image, interactions with their social environment, and feelings of uncertainty. Due to their uncertain life perspective, long-term responders are going back and forth between hope and despair, while they are longing for their 'old' life, several barriers, such as protective behavior of the social environment, force them to adjust to a life with cancer. CONCLUSION: Long-term responders are facing many challenges, such as searching for a renewed identity, dealing with ongoing uncertainty, and having to adapt to a new normal. This emphasizes the importance of providing this new patient group with tailored information and support. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals can support patients by normalizing their feelings and providing space for varying emotions. Using patient-tailored scan frequencies could help temper fear of progression.

Using smartphone-based ecological momentary assessment and personalized feedback for patients with chronic cancer-related fatigue: A proof-of-concept study.

Introduction: Chronic cancer-related fatigue (CCRF) is a complex multidimensional problem warranting person-centered care. Providing patients and therapists personalized feedback based on network analysis applied to ecological momentary assessment (EMA) data could facilitate case conceptualization in psycho-oncological care. The aim was to explore patients' and therapists' experiences of using an EMA app and personalized feedback based on network theory to aid case conceptualization in psycho-oncological care. Methods: A n = 5 proof-of-concept study was implemented in routine psycho-oncological care. We purposively selected adult cancer patients suffering from severe CCRF who were on the waitlist for psycho-oncological care. During a 3-week period participants filled out the EMA app Energy InSight (fatigue, mood, activity, responding, and context) five times a day. Participants received a descriptive and network feedback report, which they reflected upon during the first therapy sessions. Thematic analysis was used to analyze user experiences. Results: Patients experienced that filling out the Energy InSight app, as well as receiving descriptive and network-based personalized feedback provided them with insight into their CCRF. Although therapists experienced the discussion of network feedback as challenging, it facilitated the case conceptualization. Discussion: Using EMA during waitlist for psychological care seemed feasible. Patients experienced beneficial effects from filling out the EMA app and talking over the personalized feedback reports, which in turn aided case conceptualization and personalized care. Based on this evaluation, an improved version of the Energy InSight app and a therapist training for providing network feedback is developed for implementation in psycho-oncological care.

What web-based intervention for chronic cancer-related fatigue works best for whom? Explorative moderation analyses of a randomized controlled trial.

PURPOSE: Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. This study explored whether baseline characteristics moderated the effect of web-based mindfulness-based cognitive therapy (eMBCT) versus ambulant activity feedback (AAF) and a psycho-education control group (PE) on fatigue in patients suffering from CCRF. METHODS: In a randomized controlled trial, participant suffering from CCRF participated in either eMBCT, AAF, or PE. Complete data of the treatment-adherent sample (≥ 6 sessions) was used to explore whether sociodemographic, clinical, and psychological characteristics at baseline moderated the intervention effect on fatigue severity at 6 months. RESULTS: A trend showed that baseline fatigue severity and fatigue catastrophizing moderated the intervention effect. That is, at low levels of fatigue severity and catastrophizing, patients benefited more from AAF than from eMBCT and at high levels of fatigue severity and catastrophizing, patients benefited more from eMBCT than from PE. CONCLUSIONS: This study found some preliminary evidence on what treatment works best for the individual suffering from CCRF. These findings emphasize the potential gain in effectiveness of personalizing treatment. An alternative approach that might help us further in answering the question "what treatment works best for whom?" is discussed.

Personalizing Psychological Care for Chronic Cancer-Related Fatigue: A Case Study on Symptom Dynamics.

Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three hours was associated with less hopelessness and less fatigue in the following moment. At the day-level, acceptance was also being associated with less fatigue, less hopelessness, a better mood, and more motivation to do things. The patient recognized these patterns and explained how unexpected waves of fatigue can make her feel hopeless. This started a dialogue on how cultivating acceptance could potentially help her handle the fatigue. The patient would discuss this with her therapist. Feedback based on individual fatigue networks can provide direct insight into how one copes with CCRF and subsequently offer directions for treatment. Further research is needed in order to implement this in clinical practice.

Exploring Fear of Cancer Recurrence in a Sample of Heterogeneous Distressed Cancer Patients with and Without a Psychiatric Disorder.

Fear of Cancer Recurrence (FCR) is a concern among cancer patients. Recent insights suggest that FCR should be viewed as a distinct syndrome. However, few studies have explored its overlap with psychiatric morbidity. We examined this overlap in a sample of distressed cancer patients. Self-referred patients (n = 245) were assessed with the Structured Clinical Interview for DSM-IV-TR Axis-I disorders and the Fear of Cancer Recurrence Inventory-Short Form. Proportions of patients with and without a psychiatric disorder meeting validated cut-offs for screening and clinically relevant FCR were compared. The prevalence of psychiatric disorders was 36%. Clinically relevant FCR was found in 198 patients (81%). Patients with a current psychiatric disorder reported clinically relevant FCR more frequently (89%) compared to those with no disorder (77%). Of patients reporting clinically relevant FCR, the majority (61%) did not additionally meet the criteria for a psychiatric disorder. These findings suggest that there should be particular attention for patients with elevated levels of FCR, warranting FCR-specific treatment.Trial registry number Clinicaltrials.gov NCT02138513.

Forming new habits in the face of chronic cancer-related fatigue: An interpretative phenomenological study.

PURPOSE: The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. METHODS: We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. RESULTS: We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activities and rest; (4) letting go of one's habitual identity; and (5) recognizing and accepting CCRF. CONCLUSION: This study highlights the development of new habits and positive beliefs in the face of CCRF and the importance of (social) support in this process. This experiential knowledge on helpful responses can be used to inform patients and their significant others and improve self-efficacy. Health professionals could use these insights to improve recognition of CCRF and personalize treatment.

Mechanisms of Change in Mindfulness-Based Cognitive Therapy in Adults With ADHD.

Objective: Mindfulness-based cognitive therapy (MBCT) has been demonstrated to be effective in adults with ADHD. The aim of the current study was to examine its possible working mechanisms. Method: In the context of an randomized controlled trial (RCT), MBCT + TAU (treatment as usual) (n = 43) versus TAU (n = 51), we used mediation analyses to examine whether reduction of clinician-rated ADHD symptoms and improvement of positive mental health at 6-month follow-up had been mediated by change in mindfulness skills, self-compassion, and executive functioning over the course of MBCT. Results: Increase of self-compassion mediated improvement of positive mental health at 6-month follow-up. Improvement of mindfulness skills or self-compassion did not mediate the reduction in ADHD symptoms. Additional analyses suggest that self-reported inhibition did. Conclusion: The effect of MBCT on ADHD symptoms and positive mental health thus occurred via different mechanisms of change, that is, by improvements in inhibition and self-compassion, respectively.

Therapist behaviours in a web-based mindfulness-based cognitive therapy (eMBCT) for chronic cancer-related fatigue - Analyses of e-mail correspondence.

Web-based mindfulness-based cognitive therapy (eMBCT) has been found effective in decreasing fatigue severity in patients suffering from Chronic Cancer-Related Fatigue (CCRF). In web-based therapy, guidance from a therapist positively affects treatment outcome. So far, less is known about what kind of therapist behaviours contribute to treatment outcome. The present study aimed at 1) identifying therapist behaviours during eMBCT and 2) exploring whether these behaviours were correlated to a decrease in fatigue severity among patients. Qualitative content analyses were performed on 537 feedback e-mails from five therapists sent to 31 patients within a secured portal. Through content analyses, nine therapist behaviours were identified: emphatic utterances, probing self-reflection, informing, psychoeducation, task prompting, paraphrasing, task reinforcement, providing group context and alliance bolstering. Among these behaviours task prompting (19%), paraphrasing (16%) and task reinforcement (15%) were the most common. Linear regression analyses showed a significant association between informing and task prompting on the one hand and a decrease in fatigue severity on the other. Multivariate analysis indicated that informing and task prompting jointly explain the decrease in fatigue. These findings underline the importance for therapists to provide patients with sufficient information and to encourage them to do the exercises.

Capturing the complexity of mental disorders in the medically ill: the network approach on behavioral medicine.

Since Descartes introduced dualism, body and mind have been seen as separate entities. The latent disease model, the view that symptoms are caused by an underlying disease, was possible within the dualistic paradigm. This paradigm, although successful in some aspects of medicine, is also assumed to underlie psychiatric disorders. As an alternative to the latent disease model, the network approach conceptualizes disorders as complex networks of causally connected symptoms. It offers a new way of understanding psychiatric disorders by directing attention away from the underlying cause and towards the symptoms and their functional interconnectedness, making the distinction between mental and physical symptoms obsolete. This article discusses how the network perspective helps us to overcome some of the problems we have faced when diagnosing and treating psychopathology in the medically ill. Furthermore, we describe how the network perspective can stimulate new research to better understand psychopathology in medically ill patients and how it can help deliver the most suitable treatment to the individual patient.

Experiencing and responding to chronic cancer-related fatigue: A meta-ethnography of qualitative research.

OBJECTIVE: One of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer-related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta-ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF. METHODS: We conducted a comprehensive systematic literature search in five databases (05-03-2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP-criteria). We followed the seven phases of meta-ethnography to extract, translate, and synthesise first-order constructs (ie, patients' views) and second-order constructs (ie, authors' views) from the selected studies into third-order constructs (ie, new interpretations). RESULTS: Of the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third-order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a "new normal with CCRF." CONCLUSION: A new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.

Exploring the interconnectedness of fatigue, depression, anxiety and potential risk and protective factors in cancer patients: a network approach.

Researchers have extensively studied fatigue, depression and anxiety in cancer patients. Several risk and protective factors have been identified for these symptoms. As most studies address these constructs, independently from other symptoms and potential risk and protective factors, more insight into the complex relationships among these constructs is needed. This study used the multivariate network approach to gain a better understanding of how patients' symptoms and risk and protective factors (i.e. physical symptoms, social withdrawal, illness cognitions, goal adjustment and partner support) are interconnected. We used cross-sectional data from a sample of cancer patients seeking psychological care (n = 342). Using network modelling, the relationships among symptoms of fatigue, depression and anxiety, and potential risk and protective factors were explored. Additionally, centrality (i.e. the number and strength of connections of a construct) and stability of the network were explored. Among risk factors, the relationship of helplessness and physical symptoms with fatigue stood out as they were stronger than most other connections in the network. Among protective factors, illness acceptance was most centrally embedded within the network, indicating it had more and stronger connections than most other variables in the network. The network identified key connections with risk factors (helplessness, physical symptoms) and a key protective factor (acceptance) at the group level. Longitudinal studies should explore these risk and protective factors in individual dynamic networks to further investigate their causal role and the extent to which such networks can inform us on what treatment would be most suitable for the individual cancer patient.

Therapeutic alliance-not therapist competence or group cohesion-contributes to reduction of psychological distress in group-based mindfulness-based cognitive therapy for cancer patients.

Mindfulness-based cognitive therapy (MBCT) is an innovative evidence-based intervention in mental and somatic health care. Gaining knowledge of therapeutic factors associated with treatment outcome can improve MBCT. This study focused on predictors of treatment outcome of MBCT for cancer patients and examined whether group cohesion, therapeutic alliance, and therapist competence predicted reduction of psychological distress after MBCT for cancer patients. Moreover, it was examined whether therapist competence facilitated therapeutic alliance or group cohesion. Multilevel analyses were conducted on a subsample of patients collected in a larger randomized controlled trial on individual internet-based versus group-based MBCT versus treatment as usual in distressed cancer patients. The current analyses included the 84 patients who completed group-based MBCT out of 120 patients who were randomized to group-based MBCT. Group cohesion and therapist competence did not predict reduction in psychological distress, whereas therapeutic alliance did. In addition, therapist competence did not predict therapeutic alliance but was associated with reduced group cohesion. Our findings revealed that therapeutic alliance significantly contributed to reduction of psychological distress in MBCT for cancer patients. Elaborating the clinical implications of the predictive significance of therapeutic alliance might be of added value to enhance the potential effect of MBCT.