Abstract and Metadata Correction of: Use and Appreciation of a Tailored Self-Management eHealth Intervention for Early Cancer Survivors: Process Evaluation of a Randomized Controlled Trial.

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Use and Appreciation of a Tailored Self-Management eHealth Intervention for Early Cancer Survivors: Process Evaluation of a Randomized Controlled Trial.

BACKGROUND: A fully automated computer-tailored Web-based self-management intervention, Kanker Nazorg Wijzer (KNW [Cancer Aftercare Guide]), was developed to support early cancer survivors to adequately cope with psychosocial complaints and to promote a healthy lifestyle. The KNW self-management training modules target the following topics: return to work, fatigue, anxiety and depression, relationships, physical activity, diet, and smoking cessation. Participants were guided to relevant modules by personalized module referral advice that was based on participants' current complaints and identified needs. OBJECTIVE: The aim of this study was to evaluate the adherence to the module referral advice, examine the KNW module use and its predictors, and describe the appreciation of the KNW and its predictors. Additionally, we explored predictors of personal relevance. METHODS: This process evaluation was conducted as part of a randomized controlled trial. Early cancer survivors with various types of cancer were recruited from 21 Dutch hospitals. Data from online self-report questionnaires and logging data were analyzed from participants allocated to the intervention condition. Chi-square tests were applied to assess the adherence to the module referral advice, negative binominal regression analysis was used to identify predictors of module use, multiple linear regression analysis was applied to identify predictors of the appreciation, and ordered logistic regression analysis was conducted to explore possible predictors of perceived personal relevance. RESULTS: From the respondents (N=231; mean age 55.6, SD 11.5; 79.2% female [183/231]), 98.3% (227/231) were referred to one or more KNW modules (mean 2.9, SD 1.5), and 85.7% (198/231) of participants visited at least one module (mean 2.1, SD 1.6). Significant positive associations were found between the referral to specific modules (range 1-7) and the use of corresponding modules. The likelihoods of visiting modules were higher when respondents were referred to those modules by the module referral advice. Predictors of visiting a higher number of modules were a higher number of referrals by the module referral advice (ß=.136, P=.009), and having a partner was significantly related with a lower number of modules used (ß=-.256, P=.044). Overall appreciation was high (mean 7.5, SD 1.2; scale 1-10) and was significantly predicted by a higher perceived personal relevance (ß=.623, P=.000). None of the demographic and cancer-related characteristics significantly predicted the perceived personal relevance. CONCLUSIONS: The KNW in general and more specifically the KNW modules were well used and highly appreciated by early cancer survivors. Indications were found that the module referral advice might be a meaningful intervention component to guide the users in following a preferred selection of modules. These results indicate that the fully automated Web-based KNW provides personal relevant and valuable information and support for early cancer survivors. Therefore, this intervention can complement usual cancer aftercare and may serve as a first step in a stepped-care approach. TRIAL REGISTRATION: Nederlands Trial Register: NTR3375; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3375 (Archived by WebCite at http://www.webcitation.org/6jo4jO7kb).

Fear of movement in cancer survivors: validation of the modified Tampa scale of kinesiophobia-fatigue.

OBJECTIVE: To date, there is no validated questionnaire to assess fear of movement in cancer survivors. We aim to validate the modified Tampa scale of kinesiophobia-fatigue (TSK-F) in Dutch cancer survivors participating in a rehabilitation programme. We first select the optimal model for cancer survivors. Subsequently, stability, internal consistency, and construct validity of the optimal model is tested. METHODS: A sample of 658 cancer survivors participating in a rehabilitation programme was included. Out of nine models derived in chronic pain and chronic fatigue patients, the optimal model of the TSK-F was selected in a calibration sample (n1 = 329) using confirmatory factor analysis. Stability of the derived optimal model was confirmed in a validation sample (n2 = 329). Internal consistency and construct validity were assessed in the full sample. RESULTS: The 11-item two-factor model of the TSK-F was the best-fitting model for cancer survivors and it seemed to be invariant for sex and cancer diagnosis. Internal consistency of the model was acceptable (Cronbach's alpha between 0.62 and 0.74). Construct validity was illustrated by significant associations between TSK-F total and TSK-F somatic focus with perceived global health status (EORTC-QOL-C30) and fatigue (FACT-F) (p<0.001). CONCLUSIONS: The adjusted 11-item TSK-F consisting of two subscales 'somatic focus' and 'activity avoidance' seems to be a robust and valid tool in measuring fear of movement in cancer survivors with an acceptable internal consistency. Further psychometric testing of the TSK-F in cancer survivors is recommended. In the future, TSK-F scores may be used to customise rehabilitation programmes in cancer survivors.

Role of fear of movement in cancer survivors participating in a rehabilitation program: a longitudinal cohort study.

OBJECTIVE: To study the relationship between fear of movement and perceived global health status and the role of rehabilitation with graded activity in cancer survivors. DESIGN: Longitudinal cohort study. SETTING: Rehabilitation centers. PARTICIPANTS: Cancer survivors (N=1236). INTERVENTION: Twelve-week graded activity rehabilitation program. MAIN OUTCOME MEASURES: Fear of movement (Modified Tampa Scale for Kinesiophobia-Fatigue), fatigue (Functional Assessment of Cancer Therapy-Fatigue), and perceived global health status (European Organisation Research and Treatment of Cancer Quality of Life Questionnaire C30) were measured at baseline and after rehabilitation. We performed multiple linear regression analyses to examine the association between fear of movement and perceived global health status at baseline. Differences between baseline and postintervention scores were assessed with a paired t test and effect sizes (ESs). Hierarchical multiple regression analyses were used to investigate whether changes in fear of movement were associated with perceived global health status. RESULTS: Fear of movement was associated with perceived global health status prior to rehabilitation (P=.001). Only participants with high scores on baseline fear of movement showed a considerable decrease in fear of movement after rehabilitation (ES=-.69; 95% confidence interval [CI], -.80 to -.57); the reduction was largest for fears because of a somatic focus (ES=-.57; 95% CI, -.68 to -.45). Changes in fear of movement because of a somatic focus were related to perceived global health status postintervention (P=.001). CONCLUSIONS: Fear of movement is associated with the perceived global health status of cancer survivors. Fear of movement decreases after rehabilitation with graded activity in high scorers on baseline fear of movement.

Cancer rehabilitation: A Nordic and European perspective.

BACKGROUND: The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. MATERIAL AND METHODS: Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. RESULTS: Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. DISCUSSION: In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care.

Physical Activity during Cancer Treatment (PACT) Study: design of a randomised clinical trial.

BACKGROUND: Fatigue is a major problem of cancer patients. Thirty percent of cancer survivors report serious fatigue three years after finishing treatment. There is evidence that physical exercise during cancer treatment reduces fatigue. This may also lead to an improvement of quality of life. Such findings may result in a decrease of healthcare related expenditures and societal costs due to sick leave. However, no studies are known that investigated these hypotheses. Therefore, the primary aim of our study is to assess the effect of exercise during cancer treatment on reducing complaints of fatigue and on reducing health service utilisation and sick leave. METHODS/DESIGN: The Physical Activity during Cancer Treatment study is a multicentre randomised controlled trial in 150 breast and 150 colon cancer patients undergoing cancer treatment. Participants will be randomised to an exercise or a control group. In addition to the usual care, the exercise group will participate in an 18-week supervised group exercise programme. The control group will be asked to maintain their habitual physical activity pattern. Study endpoints will be assessed after 18 weeks (short term) and after 9 months (long term). Validated questionnaires will be used. PRIMARY OUTCOME: fatigue (Multidimensional Fatigue Inventory and Fatigue Quality List) and cost-effectiveness, health service utilisation and sick leave. Secondary outcome: health related quality of life (European Organisation Research and Treatment of Cancer-Quality of Life questionnaire-C30, Short Form 36 healthy survey), impact on functioning and autonomy (Impact on functioning and autonomy questionnaire), anxiety and depression (Hospital Anxiety and Depression Scale), physical fitness (aerobic peak capacity, muscle strength), body composition and cognitive-behavioural aspects. To register health service utilisation and sick leave, participants will keep diaries including the EuroQuol-5D. Physical activity level will be measured using the Short Questionnaire to Assess Health-Enhancing Physical Activity and will be monitored with an exercise log and a pedometer. DISCUSSION: This study investigates the (cost)-effectiveness of exercise during adjuvant treatment of patients with breast or colon cancer. If early physical exercise proves to be (cost) effective, establishing standardised physical exercise programmes during cancer treatment will be planned. TRIAL REGISTRATION: Current Controlled trials ISRCTN43801571, Dutch Trial Register NTR2138.

Role of patient preferences in clinical practice guidelines: a multiple methods study using guidelines from oncology as a case.

OBJECTIVE: Many treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations. DESIGN: We performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members. SETTING: Dutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent. PARTICIPANTS: 14 CPG panel members. MAIN OUTCOMES: For treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel's benefits-harm trade-off underlying recommendation; and advice on patient involvement in decision-making. RESULTS: We identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel's preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time. CONCLUSIONS: The motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

Quality of life of cancer survivors after physical and psychosocial rehabilitation.

As the number of newly diagnosed cancer patients and the survival rates of cancer increase, more and more cancer patients are facing distressing physical and psychosocial problems as a result of their cancer and its treatment. To address these problems, a 12-week rehabilitation group program for cancer patients (all cancer types), combining physical exercise and psycho-education, was tested in a longitudinal cohort study (n=658). At baseline, participants reported a low quality of life, measured by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30) (range 0-100). Halfway through the intervention significant improvements were found in all domains, except cognitive functioning. At the end of rehabilitation, participants had reached significant improvements on all outcome variables: in global quality of life (from 63.0 to 71.9), emotional functioning (from 66.2 to 74.4), cognitive functioning (from 70.5 to 74.4) and fatigue level (reduction from 49.8 to 41.8) while, moreover, non-breast cancer patients showed clinically relevant improvement in physical functioning (from 67.3 to 80.4) and social functioning (from 63.4 to 79.4) and non-working patients showed a clinically relevant improvement in role functioning (from 57.0 to 69.6).

[Guideline "Cancer rehabilitation"]. / Richtlijn 'Oncologische revalidatie'.

Initiated by IKNL (Integraal Kankercentrum Nederland), a multidisciplinary guideline for cancer rehabilitation for adult oncology patients has been developed. The guideline describes the rehabilitation care of adult patients with cancer, during and after treatment. The guideline focuses on (a) prevalence of complaints either resulting from cancer or the treatment, (b) detection of these complaints and indicated referral, (c) the intake procedure before cancer rehabilitation, (d) intervention and evaluation within cancer rehabilitation and (e) the importance of patient empowerment. The guideline is directed at all professionals giving care to patients with cancer. It concerns those (such as medical specialists, general practitioners and nurses) who are responsible for detecting cancer-related complaints and for referral to cancer rehabilitation, as well as health care professionals involved in cancer rehabilitation care (such as consultants in rehabilitation medicine, physiotherapists and psychologists). The main goal of the guideline is that every cancer patient or ex-cancer patient with (residual) complaints resulting from cancer or its treatment receives timely and appropriate cancer rehabilitation.