Fabiola Müller

Purpose
Insight into emotional distress of cancer survivors from ethnic minority groups in Europe is scarce. We aimed to compare distress levels of survivors from ethnic minorities to that of the majority population, determine whether the association between having cancer (yes vs. no) and distress differs among ethnic groups and investigate sociocultural correlates of distress.

Methods
Cross-sectional data were derived from HELIUS, a multi-ethnic cohort study conducted in the… Show more

Purpose
Insight into emotional distress of cancer survivors from ethnic minority groups in Europe is scarce. We aimed to compare distress levels of survivors from ethnic minorities to that of the majority population, determine whether the association between having cancer (yes vs. no) and distress differs among ethnic groups and investigate sociocultural correlates of distress.

Methods
Cross-sectional data were derived from HELIUS, a multi-ethnic cohort study conducted in the Netherlands. Of 19,147 participants, 351 were diagnosed with cancer (n = 130 Dutch, n = 75 African Surinamese, n = 53 South-Asian Surinamese, n = 43 Moroccan, n = 28 Turkish, n = 22 Ghanaian). Distress (PHQ-9, MCS-12) and correlates were assessed by self-report. Cancer-related variables were derived from the Netherlands Cancer Registry.

Results
Survivors were on average 7 years post-diagnosis. Survivors from South-Asian Surinamese, Moroccan, Turkish and Ghanaian origin reported more distress than survivors from Dutch origin (effect sizerange: 0.44–1.17; adjusted models). The association between having cancer or not with distress differed in direction between Dutch and the non-Dutch ethnic groups: Non-Dutch cancer patients tended to have more distress than their cancer-free peers, whereas Dutch cancer patients tended to have less distress than their cancer-free peers. For Moroccan and Turkish patients, the acculturation style of separation/marginalization, compared to integration/assimilation, was associated with higher depressive symptoms. In analyses pooling data from all ethnic minorities, lower health literacy, lower emotional support satisfaction and younger age at the time of migration were associated with higher depressive symptoms. Lower health literacy, fewer emotional support transactions, and more frequent attendance at religious services were associated with worse mental health.

Conclusion
Cancer survivors from ethnic minorities experience more distress than those from the.... Show less

Background:
While cognitive behavioral therapy (CBT) for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) can lead to the normalization of fatigue levels and resumption of activities, a subgroup of patients still evaluates fatigue negatively.

Objective:
The objective was to investigate whether eye movement desensitization and reprocessing (EMDR) therapy leads to a less negative evaluation of fatigue.

Method:
This was a randomized single-case experimental… Show more

Background:
While cognitive behavioral therapy (CBT) for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) can lead to the normalization of fatigue levels and resumption of activities, a subgroup of patients still evaluates fatigue negatively.

Objective:
The objective was to investigate whether eye movement desensitization and reprocessing (EMDR) therapy leads to a less negative evaluation of fatigue.

Method:
This was a randomized single-case experimental study. Five CFS/ME patients (all female, mean age of 35 years), who had completed CBT but still evaluated fatigue negatively, received EMDR therapy. The primary outcome, that is, negative evaluation of fatigue, was assessed daily (three items, e.g., “My fatigue is frustrating”). During EMDR therapy sessions, distress in response to a selected image was measured. Clinical assessments were performed before, directly after, and 1 month after EMDR therapy.

Results:
During EMDR therapy sessions, all patients reported high distress related to memories of having CFS/ME. EMDR therapy led to a reduction in this distress. Daily measured negative evaluations of fatigue declined in three patients, albeit not significantly. Three of five patients showed clinically relevant improvement in evaluations of fatigue on clinical pre-/post measures.

Conclusion:
EMDR therapy can reduce emotional distress associated with fatigue, but it is unclear whether it can change its negative evaluation. Show less

Background
Coronavirus disease 2019 (COVID-19) results in debilitating long-term symptoms, often referred to as Post-Acute Sequelae of SARS-CoV-2 Infection (PASC), in a substantial subgroup of patients. One of the most prevalent symptoms following COVID-19 is severe fatigue. Prompt delivery of cognitive behavioural therapy (CBT), an evidence-based treatment that has shown benefit in reducing severe fatigue in other conditions, may reduce post-COVID-19 fatigue. Based on an existing CBT… Show more

Background
Coronavirus disease 2019 (COVID-19) results in debilitating long-term symptoms, often referred to as Post-Acute Sequelae of SARS-CoV-2 Infection (PASC), in a substantial subgroup of patients. One of the most prevalent symptoms following COVID-19 is severe fatigue. Prompt delivery of cognitive behavioural therapy (CBT), an evidence-based treatment that has shown benefit in reducing severe fatigue in other conditions, may reduce post-COVID-19 fatigue. Based on an existing CBT protocol, a blended intervention of 17 weeks, Fit after COVID, was developed to treat severe fatigue after the acute phase of infection with SARS-CoV-2.

Method
The ReCOVer study is a multicentre 2-arm randomised controlled trial (RCT) to test the efficacy of Fit after COVID on severe post-infectious fatigue. Participants are eligible if they report severe fatigue 3 up to and including 12 months following COVID-19. One hundred and fourteen participants will be randomised to either Fit after COVID or care as usual (ratio 1:1). The primary outcome, the fatigue severity subscale of the Checklist Individual Strength (CIS-fatigue), is assessed in both groups before randomisation (T0), directly post CBT or following care as usual (T1), and at follow-up 6 months after the second assessment (T2). In addition, a long-term follow-up (T3), 12 months after the second assessment, is performed in the CBT group only. The primary objective is to investigate whether CBT will lead to a significantly lower mean fatigue severity score measured with the CIS-fatigue across the first two follow-up assessments (T1 and T2) as compared to care as usual. Secondary objectives are to determine the proportion of participants no longer being severely fatigued (operationalised in different ways) at T1 and T2 and to investigate changes in physical and social functioning, in the number and severity of somatic symptoms and in problems concentrating across T1 and T2.

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Introduction: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates.
Methods: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line… Show more

Introduction: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates.
Methods: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later).
Results: High stable (N = 52; 7.3%) and low/moderate stable (N = 56; 7.8%) FCP patterns over time typified the largest participant groups (N = 721). Those with an immediately actionable variant versus a non‐actionable variant (p = 0.045), with higher FCP (p < 0.001), and lower Functional Assessment of Chronic Illness Therapy —Spiritual Well‐being (FACIT‐Sp) scores (p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 (p < 0.001) and at T1 (p < 0.001), lower FACIT‐Sp scores at T1 (p = 0.001), lower education (p = 0.031) and female gender (p = 0.027) had higher FCP at T2.
Discussion: Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease. Show less

Objectives: To develop a cancer-specific multi-attribute utility instrument derived from the Functional Assessment of Cancer Therapy - General (FACT-G) health-related quality of life (HRQL) questionnaire.

Methods: We derived a descriptive system based on a subset of the 27-item FACT-G. Item selection was informed by psychometric analyses of existing FACT-G data (n = 6912) and by patient input (n = 82). We then conducted an online valuation survey, with participants recruited via an… Show more

Objectives: To develop a cancer-specific multi-attribute utility instrument derived from the Functional Assessment of Cancer Therapy - General (FACT-G) health-related quality of life (HRQL) questionnaire.

Methods: We derived a descriptive system based on a subset of the 27-item FACT-G. Item selection was informed by psychometric analyses of existing FACT-G data (n = 6912) and by patient input (n = 82). We then conducted an online valuation survey, with participants recruited via an Australian general population online panel. A discrete choice experiment (DCE) was used, with attributes being the HRQL dimensions of the descriptive system and survival duration, and 16 choice-pairs per participant. Utility decrements were estimated with conditional logit and mixed logit modeling.

Results: Eight HRQL dimensions were included in the descriptive system: pain, fatigue, nausea, sleep, work, social support, sadness, and future health worry; each with 5 levels. Of 1737 panel members who accessed the valuation survey, 1644 (95%) completed 1 or more DCE choice-pairs and were included in analyses. Utility decrements were generally monotonic; within each dimension, poorer HRQL levels generally had larger utility decrements. The largest utility decrements were for the highest levels of pain (-0.40) and nausea (-0.28). The worst health state had a utility of -0.54, considerably worse than dead.

Conclusions: A descriptive system and preference-based scoring approach were developed for the FACT-8D, a new cancerspecific multi-attribute utility instrument derived from the FACT-G. The Australian value set is the first of a series of country-specific value sets planned that can facilitate cost-utility analyses based on items from the FACT-G and related FACIT questionnaires containing FACT-G items. Show less

Objective: Fatigue is a common symptom among cancer survivors that can be successfully treated with cognitive-behavioral therapy (CBT). Insights into the working mechanisms of CBT are currently limited. The aim of this study was to investigate whether improvements in targeted cognitive-behavioral variables and reduced depressive symptoms mediate the fatigue-reducing effect of CBT.

Methods: We pooled data from three randomized controlled trials that tested the efficacy of CBT to reduce… Show more

Objective: Fatigue is a common symptom among cancer survivors that can be successfully treated with cognitive-behavioral therapy (CBT). Insights into the working mechanisms of CBT are currently limited. The aim of this study was to investigate whether improvements in targeted cognitive-behavioral variables and reduced depressive symptoms mediate the fatigue-reducing effect of CBT.

Methods: We pooled data from three randomized controlled trials that tested the efficacy of CBT to reduce severe fatigue. In all three trials, fatigue severity (checklist individual strength) decreased significantly following CBT. Assessments were conducted pre-treatment and 6 months later. Classical mediation analysis testing a pre-specified model was conducted and its results compared to those of causal discovery, an explorative data-driven approach testing all possible causal associations and retaining the most likely model.

Results: Data from 250 cancer survivors (n=129 CBT, n=121 waitlist) were analyzed. Classical mediation analysis suggests that increased self-efficacy and decreased fatigue catastrophizing, focusing on symptoms, perceived problems with activity and depressive symptoms mediate the reduction of fatigue brought by CBT. Conversely, causal discovery and post-hoc analyses indicate that fatigue acts as mediator, not outcome, of changes in cognitions, sleep disturbance and depressive symptoms.

Conclusions: Cognitions, sleep disturbance and depressive symptoms improve during CBT. When assessed pre- and post-treatment, fatigue acts as a mediator, not outcome, of these improvements. It seems likely that the working mechanism of CBT is not a one-way causal effect but a dynamic reciprocal process. Trials integrating intermittent assessments are needed to shed light on these mechanisms and inform optimization of CBT. Show less

Background: The EORTC QLU-C10D is a multiattribute utility measure derived from the cancer-specific quality-of-life questionnaire, the EORTC QLQ-C30. The QLU-C10D contains 10 dimensions (physical, role, social and emotional functioning, pain, fatigue, sleep, appetite, nausea, bowel problems). The objective of this study was to develop a United States value set for the QLU-C10D.

Methods: A US online panel was quota recruited to achieve a representative sample for sex, age (≥18 y), race… Show more

Background: The EORTC QLU-C10D is a multiattribute utility measure derived from the cancer-specific quality-of-life questionnaire, the EORTC QLQ-C30. The QLU-C10D contains 10 dimensions (physical, role, social and emotional functioning, pain, fatigue, sleep, appetite, nausea, bowel problems). The objective of this study was to develop a United States value set for the QLU-C10D.

Methods: A US online panel was quota recruited to achieve a representative sample for sex, age (≥18 y), race, and ethnicity. Respondents undertook a discrete choice experiment, each completing 16 choice-pairs, randomly assigned from a total of 960 choice-pairs. Each pair included 2 QLU-C10D health states and duration. Data were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life-year framework. Utility weights were calculated as the ratio of each dimension-level coefficient to the coefficient for life expectancy.

Results: A total of 2480 panel members opted in, 2333 (94%) completed at least 1 choice-pair, and 2273 (92%) completed all choice-pairs. Within dimensions, weights were generally monotonic. Physical functioning, role functioning, and pain were associated with the largest utility weights. Cancer-specific dimensions, such as nausea and bowel problems, were associated with moderate utility decrements, as were general issues such as problems with emotional functioning and social functioning. Sleep problems and fatigue were associated with smaller utility decrements. The value of the worst health state was 0.032, which was slightly greater than 0 (equivalent to being dead).

Conclusions: This study provides the US-specific value set for the QLU-C10D. These estimated health state scores, based on responses to the EORTC QLQ-C30 questionnaire, can be used to evaluate the cost-utility of oncology treatments. Show less

Background: Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn inform decision making. This systematic review aimed to identify and synthesise CRC survivors’ experiences of long-term impacts on health-related quality of life.
Methods: We searched Medline, Embase and PsychINFO from inception to January 2019. Qualitative studies describing… Show more

Background: Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn inform decision making. This systematic review aimed to identify and synthesise CRC survivors’ experiences of long-term impacts on health-related quality of life.
Methods: We searched Medline, Embase and PsychINFO from inception to January 2019. Qualitative studies describing CRC survivors’ experiences at least 1-year post-treatment were included. Study eligibility, quality assessment (COREQ guidelines), and data synthesis was performed independently by two reviewers and discussed with the study team.
Results: Of 1363 papers retrieved, 20 reporting 15 studies met eligibility. Thematic synthesis produced 12 themes: symptoms, physical, social, psychological and sexual functioning, impact on relationships, informal care needs provided by family/friend, supportive care needs provided by healthcare professional, health care experiences, health behaviour, financial toxicity and occupational experiences. Stoma problems (e.g. leakage, skin irritation) were common in ostomates. Survivors with no/reversed stoma experienced unexpected, longterm altered and unpredictable bowel functioning. Survivors often regulated timing, amount and foods consumed to manage bowel functioning. Less common symptoms included fatigue, impaired sleep and anal pain. Stoma problems and altered bowel functioning impaired survivors’ physical, social, sexual and psychological functioning. Cognitive functioning and heredity issues were not reported in any paper.
Conclusion: CRC survivors experience ongoing symptoms and functioning impairments more than 1-year posttreatment completion. Many survivors find their own ways to manage symptoms rather than seek professional help. Follow-up care for CRC survivors should integrate screening for long-term effects and provide targeted supportive care Show less

Abstract
Purpose Given the high survival rate of cervical cancer patients, understanding women’s health-related quality of life (HRQL) during and after treatment is of major clinical importance.We conducted a systematic review to synthesize all available evidence about the effects of each contemporary treatment modality for cervical cancer on all dimensions of women’s HRQL, including symptoms, functioning, and global HRQL.
Methods We searched four electronic databases from January 2000 to… Show more

Abstract
Purpose Given the high survival rate of cervical cancer patients, understanding women’s health-related quality of life (HRQL) during and after treatment is of major clinical importance.We conducted a systematic review to synthesize all available evidence about the effects of each contemporary treatment modality for cervical cancer on all dimensions of women’s HRQL, including symptoms, functioning, and global HRQL.
Methods We searched four electronic databases from January 2000 to September 2019, cross-referenced and searched by author name for studies of patients treated for cervical cancer that reported patient-reported outcomes (PROs) before treatment and with at least one post-treatment measurement. Two independent reviewers applied inclusion and quality criteria and extracted findings.
Studies were categorized by treatment to determine specific treatment effects on PROs. Results were narratively summarized.
Results We found twenty-nine papers reporting 23 studies. After treatments with curative intent for early or locally advanced disease, lymphedema, diarrhea, menopausal symptoms, tight and shorter vagina, pain during intercourse, and sexual worries remained long-term problems; however, sexual activity improved over time. HRQL and psychological distress were impacted during treatment with also worsening of global HRQL but improved 3–6 months after treatment. In patients with metastatic or
recurrent disease, pain improved during palliative treatment or remained stable, with no differences in global HRQL found over time.
Conclusion Whereas most symptoms worsen during treatment and improve in the first 3 months after completing treatment, symptoms like lymphedema, menopausal symptoms, and sexual worries develop gradually and persist after curative treatment. These findings can be used to inform clinical practice and facilitate communication and shared decision-making. More research is needed in ... Show less

Objective: Fatigue is a prevalent and long-lasting symptom among patients with cancer that is known to be worsened by patients’ catastrophizing thoughts about their fatigue. Spouses are also burdened by patient fatigue, which may lead them to catastrophize as well. Based on the dyadic coping literature, this study hypothesized that patient and spouse catastrophizing translate into worse fatigue through co-rumination—couples’ communications dwelling on the negative aspects of fatigue (H1). While… Show more

Objective: Fatigue is a prevalent and long-lasting symptom among patients with cancer that is known to be worsened by patients’ catastrophizing thoughts about their fatigue. Spouses are also burdened by patient fatigue, which may lead them to catastrophize as well. Based on the dyadic coping literature, this study hypothesized that patient and spouse catastrophizing translate into worse fatigue through co-rumination—couples’ communications dwelling on the negative aspects of fatigue (H1). While maladaptive for fatigue, co-rumination also was expected to foster couple relationship satisfaction (H2). Method: Posttreatment patients with cancer and their spouses (n = 101 dyads) completed daily diaries for 14 days. Patients reported on their momentary fatigue severity. Both couple members reported on their catastrophizing about the patients’ fatigue, co-rumination, and their momentary relationship satisfaction. Multilevel structural equation modeling was applied to test within-person actor- and partner-effects between catastrophizing, co-rumination, and changes in fatigue (H1) and between co-rumination and changes in relationship satisfaction (H2). Results: Whereas patient catastrophizing was directly related to their fatigue (b = 0.52, 95% credibility interval [CI] [0.09, 0.95]), as hypothesized, the effect of spouse catastrophizing on patient fatigue was mediated through co-rumination (indirect effect = 0.32, 95% CI [0.07, 0.60]). Unexpectedly, patient- and spouse-reported co-rumination were unrelated to both couple members’ relationship satisfaction. Conclusions: Spouse catastrophizing contributes to patient fatigue severity through couples’ ruminative communications. Co-rumination was not related to relationship satisfaction. Reducing patient and spouse catastrophizing and fostering adaptive dyadic communication in daily life could be targets for future interventions aiming to relieve fatigue in patients after completion of cancer treatment. Show less

OBJECTIVE: This study investigates the associations of daily partner responses toward patient's fatigue and well behavior with patient's fatigue interference and relationship satisfaction. The moderating effect of fatigue severity was also examined.

METHOD: In an intensive longitudinal design, patients treated for colorectal cancer and their partners (n = 101 dyads) completed diaries for 14 days. Patients and partners reported on partner responses toward patient's fatigue behavior (e.g.,… Show more

OBJECTIVE: This study investigates the associations of daily partner responses toward patient's fatigue and well behavior with patient's fatigue interference and relationship satisfaction. The moderating effect of fatigue severity was also examined.

METHOD: In an intensive longitudinal design, patients treated for colorectal cancer and their partners (n = 101 dyads) completed diaries for 14 days. Patients and partners reported on partner responses toward patient's fatigue behavior (e.g., resting), partner responses toward patient's well behavior (e.g., being active), and fatigue severity. Patients also indicated their fatigue interference and relationship satisfaction. Multilevel modeling was applied to assess within-person main and interaction effects.

RESULTS: Patient-reported solicitous responses toward fatigue behavior and negative responses toward well behavior were associated with increases in fatigue interference, while facilitative responses toward well behavior were associated with a decrease in fatigue interference. The latter two associations were intensified on days patients reported relatively high fatigue. Solicitous responses toward fatigue behavior and facilitative responses toward well behavior were also associated with increases in relationship satisfaction. Punishing responses toward fatigue behavior were associated with a decrease in relationship satisfaction, especially on days patients reported higher fatigue. Models using partner reports largely confirmed the main effects of partner responses on fatigue interference and relationship satisfaction but failed to reproduce the moderating effect of fatigue.

CONCLUSIONS: Daily partner responses appear to impact patients' fatigue adjustment, especially on days patients experience high fatigue levels. Only facilitative responses toward well behavior seem to benefit both patients' fatigue interference and relationship satisfaction. Couple interventions should guide partners to encourage patients'... Show less

Background
Due to the aging of the population, society includes a growing proportion of older individuals prone to chronic morbidity. This study aimed to investigate the adverse effects of single and multiple chronic morbidity on psychosocial health and whether these effects are more pronounced in individuals who are non-partnered or living alone.

Materials and methods
Baseline data from the ‘Lifelines Cohort Study’ collected between 2006 and 2013 in the Netherlands were used… Show more

Background
Due to the aging of the population, society includes a growing proportion of older individuals prone to chronic morbidity. This study aimed to investigate the adverse effects of single and multiple chronic morbidity on psychosocial health and whether these effects are more pronounced in individuals who are non-partnered or living alone.

Materials and methods
Baseline data from the ‘Lifelines Cohort Study’ collected between 2006 and 2013 in the Netherlands were used. Individuals aged 50+ (n = 25,214) were categorized according to their health status (healthy, single chronic morbidity, multiple chronic morbidity), relationship status (partnered, non-partnered), and living arrangement (living with someone, living alone). Analyses of covariance (ANCOVA) were performed to study the main- and the interaction-effects on mental health and role functioning as assessed with the RAND-36.

Results
Irrespective of having chronic morbidity, having a partner was associated with better mental health when partners shared a home. Individuals with single and especially multiple chronic morbidity had impaired role functioning. Having a partner mitigated the adverse effects of multimorbidity on role functioning, but only in individuals who shared a home with their partner. Non-partnered individuals with multimorbidity and those not sharing a home with their partner demonstrated impaired role functioning.

Conclusions
The results demonstrate that multimorbidity negatively affects role functioning, but not the mental health, of middle-aged and older individuals. Sharing a home with a partner can mitigate these adverse effects, while other combinations of relationship status and living arrangement do not. Offering intervention to those individuals most vulnerable to impaired functioning may relieve some of the increasing pressure on the health care system. An individual’s relationship status along with one’s living arrangement could foster the identification of a target... Show less

Objectives. Most studies on fatigue in patients with cancer aggregate its prevalence and severity on a group level, ignoring the possibility that subgroups of patients may differ widely in their development of fatigue. This study aimed to identify subgroups of patients with clinically distinct trajectories of fatigue from diagnosis to 18 months post-diagnosis. As fatigue might trigger goal disturbance, the study also identified trajectories of concrete and abstract goal disturbance and… Show more

Objectives. Most studies on fatigue in patients with cancer aggregate its prevalence and severity on a group level, ignoring the possibility that subgroups of patients may differ widely in their development of fatigue. This study aimed to identify subgroups of patients with clinically distinct trajectories of fatigue from diagnosis to 18 months post-diagnosis. As fatigue might trigger goal disturbance, the study also identified trajectories of concrete and abstract goal disturbance and longitudinally examined their co-occurrence with fatigue.

Design. Prospective design with quantitative and qualitative method of data collection.

Methods. Patients with colorectal cancer (n = 183) reported on their levels of fatigue and goal disturbance shortly after diagnosis (T1) and at 7 months (T2) and 18 months (T3) post-diagnosis. Growth mixture model analyses were performed to identify trajectories of fatigue and goal disturbance. Guidelines for the clinical relevance of fatigue were applied.

Results. Four clinically distinct trajectories of fatigue were identified as follows: (1) persistent severe fatigue (25.4%), (2) moderate fatigue (56.1%), (3) no fatigue (13.8%), and (4) rapidly improving fatigue (4.7%). The majority of patients with cancer reported high disturbance of their concrete goals, while high disturbance of abstract goals was less evident. Fatigue and concrete goal disturbance co-occurred longitudinally.

Conclusions. The fatigue and goal disturbance experienced from diagnosis to 18 months post-diagnosis differ considerably for subgroups of patients with cancer. Fatigue and concrete goal disturbance are persistent burdens in the majority of patients. Investigating symptom burden beyond average trends can guide clinicians to identify patients most in need for treatment. Targeting goal disturbance might benefit the psychological Show less

OBJECTIVE:
Fatigue is a distressing symptom many cancer patients experience even after completion of treatment. Although theory and empirical evidence indicate that negative cognitions perpetuate fatigue after completion of treatment, insight into how this process unfolds in daily life is limited. This study used an intensive longitudinal design to investigate the reciprocal relationship between catastrophizing and fatigue in daily life and whether affective and behavioral processes mediate… Show more

OBJECTIVE:
Fatigue is a distressing symptom many cancer patients experience even after completion of treatment. Although theory and empirical evidence indicate that negative cognitions perpetuate fatigue after completion of treatment, insight into how this process unfolds in daily life is limited. This study used an intensive longitudinal design to investigate the reciprocal relationship between catastrophizing and fatigue in daily life and whether affective and behavioral processes mediate these relationships.

METHODS:
Post-treatment colorectal cancer patients (n = 101) completed daily diaries (14 days, 3 times daily) regarding their fatigue, catastrophizing, positive and negative affect, and physical activity. Multilevel modeling was applied to investigate within-person associations within days.

RESULTS:
Analyses revealed a positive reciprocal relationship between fatigue and catastrophizing throughout the day. That is, high levels of catastrophizing were associated with increases in fatigue within patients. In turn, but to a lesser extent, high levels of fatigue predicted increases in catastrophizing at the next assessment. Low positive affect and high negative affect mediated the effect of catastrophizing on increases in fatigue. Only negative affect mediated the reverse relationship. Physical activity did not mediate either relationship.

CONCLUSIONS:
This study provides evidence for a mutually reinforcing relationship between catastrophizing and fatigue in daily life, which might explain the perpetuation of fatigue after completion of cancer treatment. Fatigue-specific cognitive behavior therapy could be improved by educating patients about this daily reciprocal relationship, train them to quickly replace catastrophizing thoughts in daily life, and help them to cope with affective changes induced by fatigue. Show less

Highlights

• We apply card sorting to evaluate a protocol website’s structure, after one year of use.
• Qualitative analysis of labels and cluster analysis of piles of cards were combined.
• The results offer insight into the target groups’ mental models and te everyday information needs.
• The overall website structure is validated, but additional menu categories did emerge.
• Card sorting is useful to evaluate information architecture and evolving user… Show more

Highlights

• We apply card sorting to evaluate a protocol website’s structure, after one year of use.
• Qualitative analysis of labels and cluster analysis of piles of cards were combined.
• The results offer insight into the target groups’ mental models and te everyday information needs.
• The overall website structure is validated, but additional menu categories did emerge.
• Card sorting is useful to evaluate information architecture and evolving user information needs. Show less