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Resilience is defined as the maintenance or relatively quick recovery of mental health during and after adversity. Rather than focusing on psychopathology and its causes, resilience research aims to understand what protective mechanisms shield individuals against developing such disorders and translate these insights to improve psychosocial care. This resilience approach seems especially promising for the field of oncology because patients face stressor after stressor from diagnosis to survivorship. Helping patients to learn how they can best use the resources and abilities available to them can empower patients to handle subsequent stressors. In the past few decades, resilience has increasingly been considered as a dynamic process of adaptation. While researchers use this definition, resilience has not yet been studied as a dynamic process in the field of oncology. As a result, the potential of resilience research to gain insight into what helps protect cancer patients from developing psychopathology is limited. We discuss conceptual and methodological proposals to advance resilience research in oncology. Most importantly, we propose applying prospective longitudinal designs to capture the dynamic resilience process. By gaining insight in how cancer patients engage in protective factors, resilience research can come to its full potential and help prevent psychopathology.
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Adaptação Psicológica , Neoplasias , Resiliência Psicológica , Humanos , Neoplasias/psicologiaRESUMO
OBJECTIVES: Lifestyle promotion during follow-up consultations may improve long-term health and quality of life in endometrial cancer patients. This study aimed to identify barriers and facilitators to improve and sustain a healthy lifestyle that can be translated to behavioral methods and strategies for lifestyle counseling. METHODS: Endometrial cancer patients from three hospitals were recruited to participate in a semi-structured interview. The data were transcribed and coded. Thematic analysis was applied to identify themes and the behavior change wheel was used as a theoretical framework. Data saturation was confirmed after 18 interviews. RESULTS: Barriers included knowledge gaps as well as lack of motivation and environmental opportunities to engage in health-promoting behavior. Facilitators included applying incremental lifestyle changes, social support, positive reinforcements, and the ability to overcome setbacks. CONCLUSIONS: We propose the following intervention functions: education, persuasion, training, environmental restructuring, and enablement. Suitable behavior change techniques to deliver the intervention functions include information about the consequences of certain behavior, feedback on behavior, credible source, graded tasks, habit formation, restructuring of the environment, prompts/cues, goal setting, action planning, and social support. Including these recommendations in lifestyle counseling could aid lasting lifestyle change since it suits the needs and preferences of patients.
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Neoplasias do Endométrio , Qualidade de Vida , Humanos , Feminino , Assistência ao Convalescente , Pesquisa Qualitativa , Estilo de Vida Saudável , AconselhamentoRESUMO
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.
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Neoplasias Pulmonares , Cuidados Paliativos , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa QualitativaRESUMO
OBJECTIVE: Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers). METHODS: We searched for all types of peer-reviewed studies that determined adult (≥18 years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used. RESULTS: A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity). CONCLUSIONS: Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.
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Cuidadores , Neoplasias , Adulto , Humanos , Cuidadores/psicologia , Inteligência Artificial , Pacientes , Comunicação , Emoções , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
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.
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Fadiga , Neoplasias , Humanos , Fadiga/psicologia , Neoplasias/complicações , Neoplasias/terapia , Ansiedade/psicologia , CatastrofizaçãoRESUMO
OBJECTIVE: Fear of Cancer Recurrence (FCR) is highly prevalent among cancer survivors and leads to decreased quality of life and increased healthcare costs. We assessed the effectiveness of a guided online primary care intervention for FCR, compared to waiting list. METHODS: In this RCT, participants were recruited online and randomised 1:1. All adults who finished successful curative cancer treatment between 3 months and 10 years ago, wanted support for FCR, and had sufficient Dutch skills were eligible. The intervention consisted of a 10-week online programme and three to five video calling sessions with a trained mental health worker. After 6 months, the control group received the same intervention. The primary outcome was the difference between the groups in the change in FCR severity from baseline (T0) to 6 months (T2), measured online with the short form of the Fear of Cancer Recurrence Inventory. RESULTS: One hundred and seventy-three participants were enroled and randomised to the intervention (n = 86) or control group (n = 87). FCR severity dropped 2.1 points more in the intervention group than in the control group (2.7 points (SD = 3.9) versus 0.6 points (SD = 3.6), t(154) = 3.4, p = 0.0007). General mental well-being also improved significantly in the intervention group and remained stable in the control group. These improvements remained at 10 months follow up. CONCLUSIONS: This easily accessible and relatively inexpensive intervention effectively reduces FCR and has potential to replace or precede existing more intensive psychological treatments, improving patients' access to care. TRIAL REGISTRATION: The trial was prospectively registered in the Netherlands Trial Register on 25-02-2019 with number NL7573.
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Terapia Cognitivo-Comportamental , Qualidade de Vida , Adulto , Humanos , Recidiva Local de Neoplasia/terapia , Recidiva Local de Neoplasia/psicologia , Medo/psicologia , Atenção Primária à SaúdeRESUMO
PURPOSE: Patients with chronic painful chemotherapy-induced peripheral neuropathy (CIPN) may experience a negative impact of CIPN on daily life. They can use various coping (i.e., dealing with symptoms and resulting impairments in general) and self-management (i.e., practical actions to reduce symptoms) strategies to live with their limitations. This paper aimed to examine experienced helpful coping and self-management strategies of patients with chronic painful CIPN. METHODS: Semi-structured interviews were conducted with twelve patients with chronic painful CIPN. We applied a hybrid deductive-inductive coding approach. ATLAS.ti was used for coding. RESULTS: Generated from the data were two themes and nine codes for coping and four themes and 31 codes for self-management strategies. Coping of patients often included active strategies like planning, seeking social support, and acceptance. Additionally, patients often used passive strategies such as focusing on and venting emotions and suppressing competing activities. The most common self-management strategies were mostly passive (i.e., medication, deliberate choice of shoes, resting, sitting, and consulting healthcare professionals) but also active (i.e., exercising) strategies. CONCLUSION: Patients exhibit a great variety of coping and self-management strategies that they perceive as helpful to deal with chronic painful CIPN. However, research has shown that certain strategies are not that helpful or even come with aversive effects. More research into the effectiveness and implementation of psychosocial interventions is needed since it may help patients adopting helping strategies. In addition, healthcare professionals need to refer patients with CIPN in a timely manner to physical therapists, occupational therapists, or rehabilitation teams to reduce or prevent (further) impairments. IMPLICATIONS FOR CANCER SURVIVORS: Patients can consult one of their healthcare providers in case of problems in dealing with their symptoms, to get proper guidance and possible referral.
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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.
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Saúde Mental , Neoplasias , Humanos , Inquéritos e Questionários , Psicoterapia , Psicopatologia , Análise Multivariada , Adaptação Psicológica , Neoplasias/terapiaRESUMO
PURPOSE: A significant proportion of cancer patients suffer from chemotherapy-induced peripheral neuropathy (CIPN). This descriptive study aimed to examine patients' experience of CIPN symptoms, daily limitations, involvement of healthcare professionals, and social support. METHODS: Cross-sectional data have been collected in the Netherlands via a national online questionnaire comprising closed items only (February 2021). RESULTS: Out of 3752 respondents, 1975 received chemotherapy only (i.e., without targeted therapy) and were therefore included. The majority (71.2%) reported symptoms in both hands and feet (e.g., tingling and loss of sensation or diminished sensation). Participants reported most limitations in household chores, social activities, hobbies, sports, walking, and sleeping and least in family/(taking care of) children, cycling, driving, self-care, eating and drinking, and sexuality and intimacy. Many patients indicated that their healthcare professionals informed them about the possibility of CIPN development before treatment (58.4%), and they paid attention to CIPN during and after treatment (53.1%). However, many patients (43%) reported a lack of information on what to do when CIPN develops. Few participants (22%) visited their general practitioner (GP) for CIPN. In general, patients' social environments sometimes to always showed empathy to patients. CONCLUSIONS: Symptoms of CIPN are frequently reported and can result in various daily limitations. Support from professionals and peers is crucial in managing CIPN, which is sometimes lacking. Appropriate guidance and support should be provided to patients to decrease the impact of CIPN on daily life. Future research should investigate differences in chemotherapeutic agents and the resulting symptoms and consequences.
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BACKGROUND: Around 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy, which comes with limitations in daily functioning and worsened quality of life(QoL). Treatment options are scarce. Our aim was to develop an online self-help intervention based on Acceptance and Commitment Therapy (ACT) to reduce pain interference in cancer survivors experiencing painful chronic CIPN. MATERIAL AND METHODS: This article applied a patient-centered design process using the Center for eHealth Research (CeHRes) roadmap. User needs were examined using online semi-structured interviews with patients and experts (N = 23). Interviews were transcribed verbatim and analyzed using thematic analysis. Personas were created based on interviews. Intervention content was based on identified user needs and ACT. Content and design were finalized using low-fidelity prototype testing (N = 5), and high-fidelity prototype testing (N = 7). RESULTS: Patients appreciated and agreed with the elements of ACT, had varying guidance needs, and wanted to have autonomy (e.g., moment and duration of use). Additionally, it was important to be aware that patients have had a life-threatening disease which directly relates to the symptoms they experience. Patients reported to prefer a user-friendly and accessible intervention. Similar points also emerged in the expert interviews. The final intervention, named Embrace Pain, includes six sessions. Session content is based on psychoeducation and all ACT processes. Further interpretation of the intervention (such as quotes, guidance, and multimedia choices) is based on the interviews. CONCLUSION: This development demonstrated how a patient-centered design process from a theoretical framework can be applied. Theory-driven content was used as the basis of the intervention. Findings show an online ACT intervention designed for cancer survivors with painful chronic CIPN.
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Terapia de Aceitação e Compromisso , Antineoplásicos , Sobreviventes de Câncer , Neoplasias , Doenças do Sistema Nervoso Periférico , Humanos , Qualidade de Vida , Dor , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/terapia , Antineoplásicos/uso terapêutico , Assistência Centrada no Paciente , Neoplasias/terapiaRESUMO
BACKGROUND: Sarcoidosis-associated fatigue is highly prevalent and is often reported as the most burdensome symptom of sarcoidosis. Management of fatigue is challenging, and evidence-based therapies are lacking. In this TIRED trial, we aimed to assess the effects of a 12-week online mindfulness-based cognitive therapy (eMBCT) on fatigue. METHODS: This study was a prospective, open-label, multicentre randomised controlled trial, conducted at three centres in the Netherlands. Eligible patients were 18 years or older, had stable sarcoidosis, and a score of more than 21 points on the Fatigue Assessment Scale (FAS). Patients were randomised into either the eMBCT or the control group. Participants completed patient-reported outcome measures at baseline, after intervention (T1), and 12 weeks after completion of eMBCT (T2). The primary outcome was the change in FAS score at T1 in the eMBCT group compared with the control group, assessed with the independent students't test in all patients who started the study. Secondary outcomes included within-group difference in FAS score at T1 and T2, between-group difference in FAS score at T2, and changes in the Hospital Anxiety and Depression Scale, the Freiburg Mindfulness Inventory-Short Form, and the Kings Sarcoidosis Questionnaire. The study was registered at the Netherlands Trial Register, NL7816. FINDINGS: Between June 5, 2019, and Oct 28, 2021, 99 patients were randomly assigned to the eMBCT (n=52) or the control (n=47) groups. Six patients withdrew consent after psychological screening before the start of eMBCT. Baseline FAS score was similar in both groups (34·57 [SD 6·07] for 46 patients in the eMBCT group and 35·51 [4·65] for 47 patients in the control group). Mean change in FAS score at T1 was -4·53 (SD 5·77; p<0·0001) in the eMBCT group and -1·28 (3·80; p=0·026) in the control group (between-group difference 3·26 [95% CI 1·18 to 5·33; p=0·0025]). Furthermore, the eMBCT group had a significant improvement in anxiety (mean between-group difference 1·69, 95% CI 0·22-3·16; p=0·025), depressive symptoms (1·52, 0·08-2·95; p=0·039), mindfulness (3·1, 0·70-5·49; p=0·022), and general health status (6·28, 2·51-10·06; p=0·002) at T1, compared with the control group. INTERPRETATION: 12 week eMBCT improves fatigue, anxiety, depression, mindfulness, and health status in patients with sarcoidosis-associated fatigue. FUNDING: Dutch Sarcoidosis Patient Association (Sarcoidose.nl). TRANSLATION: For the Dutch translation of the summary see Supplementary Materials section.
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Terapia Cognitivo-Comportamental , Atenção Plena , Humanos , Estudos Prospectivos , Fadiga/etiologia , Fadiga/terapia , Inquéritos e Questionários , Qualidade de VidaRESUMO
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.
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Neoplasias , Humanos , Neoplasias/complicações , Coleta de Dados , Pesquisa QualitativaRESUMO
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.
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PURPOSE: Many cancer patients and survivors experience fear or worry about cancer recurrence (FCR). Evidence suggests support for FCR is their largest unmet need. We aimed to assess which types of support are needed, which providers are preferred and to what extent patients' needs are being met. METHODS: Together with the Dutch Federation of Cancer Patient Organisations (NFK), a purpose-designed questionnaire was distributed online via e-mail, newsletters and social media. All questions were multiple choice or Likert scales, except for an open-ended question about the preferred provider of care. RESULTS: Out of 5323 respondents, 4511 had experienced FCR and were included. Among them, 94% indicated a need for support. The required types of support that were reported the most were talking about FCR (69%), enjoyable activities for distraction (56%) and psychological help or coaching (40%). On average, younger respondents and women wanted more support than older respondents and men. Eighty-five percent of respondents received at least one type of support they wanted. Practical tips about FCR and additional medical check-ups were most often missed. Social contacts provided an important part of support, especially with talking and distracting activities. For other types of support, respondents usually preferred professionals. CONCLUSIONS: Almost all patients who experience FCR have a need for support. Even though most receive some support, several gaps remain. IMPLICATIONS FOR CANCER SURVIVORS: Many report an unmet need for psychological help or practical tips about FCR. We recommend for healthcare providers to discuss FCR with patients and inform them about the support available.
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INTRODUCTION: Cancer-related fatigue (CRF) is one of the most reported long-term effects breast cancer patients experience after diagnosis. Many interventions for CRF are effective, however, not for every individual. Therefore, intervention advice should be adjusted to patients' preferences and characteristics. Our aim was to develop an overview of eHealth interventions and their (preference sensitive) attributes. METHODS: eHealth interventions were identified using a scoping review approach. Eligible studies included breast cancer patients and assessed CRF as outcome. Interventions were categorised as physical activity, mind-body, psychological, 'other' or 'combination'. Information was extracted on various (preference sensitive) attributes, like duration, intensity, peer support and costs. RESULTS: Thirty-five interventions were included and divided over the intervention categories. (Preference sensitive) attributes varied both within and between these categories. Duration varied from 4 weeks to 6 months, intensity from daily to own pace. Peer support was present in seven interventions and costs were known for six. CONCLUSION: eHealth interventions exist in various categories, additionally, there is much variation in (preference sensitive) attributes. This provides opportunities to implement our overview for personalised treatment recommendations for breast cancer patients struggling with CRF. Taking into account patients' preferences and characteristics suits the complexity of CRF and heterogeneity of patients.
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Neoplasias da Mama , Telemedicina , Humanos , Feminino , Preferência do Paciente , Fadiga/etiologia , Fadiga/terapia , Neoplasias da Mama/complicações , Neoplasias da Mama/terapia , Exercício FísicoRESUMO
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.
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BACKGROUND: About 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy. This condition, for which treatment options are scarce, comes with limitations in daily life functioning and decreased quality of life. The current study examines the effectiveness of an online self-help intervention based on Acceptance and Commitment Therapy (ACT) in comparison to a waiting list condition (WLC) to deal with CIPN. In addition, it examines which factors moderate effects and to what extent the effects differ between guided and unguided ACT intervention. METHODS: A two-parallel, non-blinded randomized controlled trial (RCT) will be carried out. Adult cancer survivors who experience painful CIPN for at least 3 months and completed chemotherapy at least 6 months ago will be recruited (n=146). In the intervention condition, participants will follow an 8-week self-management course containing 6 modules regarding psychoeducation and ACT processes, including therapeutic email guidance. By means of text and experiential exercises, supplemented with illustrations, metaphors, and audio files, people will learn to carry out value-oriented activities in their daily life with pain. Participants will learn new ways of coping with pain, including reducing pain avoidance and increasing pain acceptance. Participants in the WLC will be invited to follow the intervention without therapeutic guidance 5 months after start. Pain interference is the primary outcome, while psychological distress, quality of life, CIPN symptom severity, pain intensity, psychological flexibility, mindfulness skills, values-based living, and pain catastrophizing will serve as secondary outcomes. All outcome measures will be evaluated at inclusion and baseline, early-intervention, mid-intervention, post-treatment, and 3- and 6-month post-treatment. Qualitative interviews will be conducted post-treatment regarding experiences, usage, usability, content fit, and satisfaction with the intervention. DISCUSSION: This study will provide valuable information on the effectiveness of an online self-help intervention based on ACT versus WLC for chronic painful CIPN patients. TRIAL REGISTRATION: ClinicalTrials.gov NCT05371158 . Registered on May 12, 2022. PROTOCOL VERSION: version 1, 24-05-2022.
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Terapia de Aceitação e Compromisso , Antineoplásicos , Sobreviventes de Câncer , Neoplasias , Doenças do Sistema Nervoso Periférico , Adulto , Antineoplásicos/efeitos adversos , Humanos , Dor , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/diagnóstico , Doenças do Sistema Nervoso Periférico/terapia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do TratamentoRESUMO
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.
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Terapia Cognitivo-Comportamental , Intervenção Baseada em Internet , Atenção Plena , Neoplasias , Fadiga/etiologia , Fadiga/psicologia , Fadiga/terapia , Humanos , Neoplasias/terapia , Resultado do TratamentoRESUMO
OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).
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Sobreviventes de Câncer , Adulto , Medo , Feminino , Humanos , Masculino , Recidiva Local de Neoplasia/epidemiologia , Transtornos Fóbicos , PrevalênciaRESUMO
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.