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Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support in routine, everyday care leaving this population vulnerable to worse health status, long-term disability, and poorer survival. Enabling cancer patients to manage the medical and emotional consequences and lifestyle and work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer puts forth six priority areas for action: Action 1: Prepare patients and survivors for active involvement in care; Action 2: Shift the care culture to support patients as partners in cocreating health and embed self-management support in everyday health-care provider practices and in care pathways; Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula; Action 4: Establish and reach consensus on a patient-reported outcome system for measuring the effects of self-management support and performance accountability; Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations; Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need and stimulation of research to advance knowledge. It is time for a revolution to better integrate self-management support as part of high-quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery, and possibly improve survival. [ABSTRACT FROM AUTHOR]

Background: As colon cancer is increasingly becoming a chronic illness with a broad range of symptoms, there is a need for individually tailored care for these patients.Objective: To investigate patients' opinions about GP involvement in survivorship care and the use of eHealth applications, such as Oncokompas2.0, to support self-management. Oncokompas2.0 is an interactive website that monitors quality of life via participant-reported outcomes and provides feedback and personalized supportive care.Methods: We conducted a qualitative study using semi-structured interviews with patients diagnosed with stages I-III colon cancer treated with curative intent. Twenty participants (nine men, age range 49-86 years) were recruited in five Dutch hospitals by purposive sampling. Thematic data analysis was done by two coders.Results: Possible benefits of greater GP involvement include better accessibility of care and additional guidance. Participants considered an increased workload for the already busy GP as a disadvantage. Requirements for greater GP involvement were assurance of sufficient knowledge and expertise of the GP and easy access to secondary care. Most participants expected that Oncokompas2.0 would increase awareness of symptoms and concerns and provide more insight into support possibilities. Reservations mentioned were the expected loss of personal contact with health professionals and the feasibility of implementation in the total patient population.Conclusion: Colon cancer patients see some benefit of greater GP involvement and the use of Oncokompas2.0 to improve survivorship care. Our study results support initiatives to further explore GP-led survivorship care and the implementation of eHealth. [ABSTRACT FROM AUTHOR]

Background: Partners of cancer patients are the cornerstone of supportive cancer care. They assume different roles and responsibilities that optimally support the patient. Such support is highly demanding, and many partners report (mental) health problems. However, many of them do not use professional supportive care themselves. Offering a Web-based self-help intervention based on Acceptance and Commitment Therapy (ACT) and self-compassion could be an important resource to support this group. This qualitative study aimed to examine user-experiences with a Web-based self-help intervention based on ACT and self-compassion among partners of cancer patients.Methods: Individual in-depth interviews, about partners' appreciation of the intervention and lessons learned, were conducted with 14 partners of cancer patients who used the Web-based self-help intervention. Interviews were audio-recorded, transcribed verbatim and analyzed by three independent coders both deductively and inductively.Results: In general, partners appreciated the intervention, however, they also expressed ambivalent feelings towards peer support, the content of the feedback of their counselor, and the 'tunneled' structure of the intervention. The majority of the partners reported being more self-compassionate accepting that they experienced negative thoughts and feelings, they reported that they learned to increase the distance between their thoughts and themselves, they indicated being more aware of their personal values, and they thought that they were better able to commit to those values. They also reported other (non-specific) helpful processes such as insight and acknowledgement, positivity, the possibility to tell their story, time for themselves, and feeling closer and more connected with their partner (the patient).Conclusions: Partners of cancer patients indicated to appreciate the Web-based self-help intervention based on ACT and self-compassion. They felt that the intervention helped them to cope with negative emotions, thoughts, and one's suffering; to practice self-kindness; and to clarify values based on difficult recent experiences. In addition, they felt that the intervention supported them to obtain insight and acknowledgement, positivity, to tell their story, make time for themselves, and feeling closer and more connected with the patient. We think that a Web-based psychological intervention based on ACT and self-compassion may be a valuable contribution in supporting partners of cancer patients. [ABSTRACT FROM AUTHOR]

Background: Total laryngectomy with or without adjuvant (chemo)radiation often induces speech, swallowing and neck and shoulder problems. Speech, swallowing and shoulder exercises may prevent or diminish these problems. The aim of the present paper is to describe the study, which is designed to investigate the effectiveness and cost-utility of a guided self-help exercise program built into the application "In Tune without Cords" among patients treated with total laryngectomy.Methods/design: Patients, up to 5 years earlier treated with total laryngectomy with or without (chemo)radiation will be recruited for participation in this study. Patients willing to participate will be randomized to the intervention or control group (1:1). Patients in the intervention group will be provided access to a guided self-help exercise program and a self-care education program built into the application "In Tune without Cords". Patients in the control group will only be provided access to the self-care education program. The primary outcome is the difference in swallowing quality (SWAL-QOL) between the intervention and control group. Secondary outcome measures address speech problems (SHI), shoulder disability (SDQ), quality of life (EORTC QLQ-C30, QLQ-H&N35 and EQ-5D), direct and indirect costs (adjusted iMCQ and iPCQ measures) and self-management (PAM). Patients will be asked to complete these outcome measures at baseline, immediately after the intervention or control period (i.e. at 3 months follow-up) and at 6 months follow-up.Discussion: This randomized controlled trial will provide knowledge on the effectiveness of a guided self-help exercise program for patients treated with total laryngectomy. In addition, information on the value for money of such an exercise program will be provided. If this guided self-help program is (cost)effective for patients treated with total laryngectomy, the next step will be to implement this exercise program in current clinical practice.Trial Registration: NTR5255 Protocol version 4 date September 2015. [ABSTRACT FROM AUTHOR]

Background: Evidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users. Objective: To examine partners' interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention. Methods: Semistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently. Results: The need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a "step-by-step" approach, meaning that the content of the intervention should match the stage of their partner's disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants' opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were "coping with feelings and emotions," "should I or shouldn't I spare my partner?," "communicating with each other," "asking for help and refusing help," and "moving on with life after cancer treatment." Furthermore, participants suggested additional topics of "dare to enjoy" and "acceptance of the patient's disease." Conclusions: A Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features. [ABSTRACT FROM AUTHOR]

Background: There is a growing recognition that cancer not only affects the lives of the patients, but also the lives of their partners. Partners of cancer patients are highly involved in the illness trajectory by providing informal care and they often experience distress. However, supporting interventions for this group are scarce and existing interventions bear several limitations. On the basis of the need for theory- and evidence-based supportive interventions for partners of cancer patients, the web-based self-help intervention Hold on, for each other has been developed. This intervention is based on Acceptance and Commitment Therapy. The primary objective of the RCT is to investigate the (cost-) effectiveness of the intervention. Additional goals are (1) to examine if psychological flexibility, self-compassion, mastery, supportive behavior, posttraumatic growth and resilience are mediators of the intervention's effects on the partners' mental health; (2) to examine the moderating effects of the socio demographics (age, gender, education, working situation, family situation) and disease-related characteristics of the patients (sort of cancer, stage of disease, duration and treatment of cancer); and (3) to investigate to what extend participants are satisfied with the intervention, which parts of the intervention are mostly used, and how adherent the users are. Methods/Design: A three-armed randomized controlled trial (RCT) will be conducted to compare two versions of the intervention Hold on, for each other with a waiting list control condition. Both intervention conditions contain the same content and differ only with regard to the form of professional support (personal support versus automatic support). Adult partners of cancer patients with mild to moderate depressive and anxiety symptoms, will be recruited through a multi-component strategy. Online measurements by self-assessment will be made on four measurement points (prior to randomization (baseline-measurement) and 3, 6 and 12 months after baseline). Discussion: When proven effective, Hold on, for each other can be an invaluable contribution to the healthcare system and it could be offered to all partners of cancer patients who are in need for additional support. Trial registration: Dutch Trial Register, trial registration number NTR4035, date of registration: 17 March 2013. [ABSTRACT FROM AUTHOR]

Background: Smoking cessation (SC) interventions may contribute to better treatment outcomes and the general well-being of cancer survivors.Objective: This study aims to evaluate the effectiveness, cost-effectiveness, and cost-utility of a digital interactive SC intervention compared with a noninteractive web-based information brochure for cancer survivors.Methods: A health economic evaluation alongside a pragmatic 2-arm parallel-group randomized controlled trial was conducted with follow-ups at 3, 6, and 12 months. The study was conducted in the Netherlands over the internet from November 2016 to September 2019. The participants were Dutch adult smoking cancer survivors with the intention to quit smoking. In total, 165 participants were included and analyzed: 83 (50.3%) in the MyCourse group and 82 (49.7%) in the control group. In the intervention group, participants had access to a newly developed, digital, minimally guided SC intervention (MyCourse-Quit Smoking). Control group participants received a noninteractive web-based information brochure on SC. Both groups received unrestricted access to usual care. The primary outcome was self-reported 7-day smoking abstinence at the 6-month follow-up. Secondary outcomes were quality-adjusted life years gained, number of cigarettes smoked, nicotine dependence, and treatment satisfaction. For the health economic evaluation, intervention costs, health care costs, and costs stemming from productivity losses were assessed over a 12-month horizon.Results: At the 6-month follow-up, the quit rates were 28% (23/83) and 26% (21/82) in the MyCourse and control groups, respectively (odds ratio 0.47, 95% CI 0.03-7.86; P=.60). In both groups, nicotine dependence scores were reduced at 12 months, and the number of smoked cigarettes was reduced by approximately half. The number of cigarettes decreased more over time, and the MyCourse group demonstrated a significantly greater reduction at the 12-month follow-up (incidence rate ratio 0.87; 95% CI 0.76-1.00; P=.04). Intervention costs were estimated at US $193 per participant for the MyCourse group and US $74 for the control group. The mean per-participant societal costs were US $25,329 (SD US $29,137) and US $21,836 (SD US $25,792), respectively. In the cost-utility analysis, MyCourse was not preferred over the control group from a societal perspective. With smoking behavior as the outcome, the MyCourse group led to marginally better results per reduced pack-year against higher societal costs, with a mean incremental cost-effectiveness ratio of US $52,067 (95% CI US $32,515-US $81,346).Conclusions: At 6 months, there was no evidence of a differential effect on cessation rates; in both groups, approximately a quarter of the cancer survivors quit smoking and their number of cigarettes smoked was reduced by half. At 12 months, the MyCourse intervention led to a greater reduction in the number of smoked cigarettes, albeit at higher costs than for the control group. No evidence was found for a differential effect on quality-adjusted life years.Trial Registration: The Netherlands Trial Register NTR6011; https://www.trialregister.nl/trial/5434.International Registered Report Identifier (irrid): RR2-10.1186/s12885-018-4206-z. [ABSTRACT FROM AUTHOR]

Background: The eHealth Impact Questionnaire (eHIQ) provides a standardized method to measure attitudes of electronic health (eHealth) users toward eHealth. It has previously been validated in a population of eHealth users in the United Kingdom and consists of 2 parts and 5 subscales. Part 1 measures attitudes toward eHealth in general and consists of the subscales attitudes towards online health information (5 items) and attitudes towards sharing health experiences online (6 items). Part 2 measures the attitude toward a particular eHealth application and consists of the subscales confidence and identification (9 items), information and presentation (8 items), and understand and motivation (9 items).Objective: This study aimed to translate and validate the eHIQ in a Dutch population of eHealth users.Methods: The eHIQ was translated and validated in accordance with the COnsensus-based Standards for the selection of health status Measurement INstruments criteria. The validation comprised 3 study samples, with a total of 1287 participants. Structural validity was assessed using confirmatory factor analyses and exploratory factor analyses (EFAs; all 3 samples). Internal consistency was assessed using hierarchical omega (all 3 samples). Test-retest reliability was assessed after 2 weeks, using 2-way intraclass correlation coefficients (sample 1). Measurement error was assessed by calculating the smallest detectable change (sample 1). Convergent and divergent validity were assessed using correlations with the remaining measures (all 3 samples). A graded response model was fit, and item information curves were plotted to describe the information provided by items across item trait levels (all 3 samples).Results: The original factor structure showed a bad fit in all 3 study samples. EFAs showed a good fit for a modified factor structure in the first study sample. This factor structure was subsequently tested in samples 2 and 3 and showed acceptable to good fits. Internal consistency, test-retest reliability, convergent validity, and divergent validity were acceptable to good for both the original as the modified factor structure, except for test-retest reliability of one of the original subscales and the 2 derivative subscales in the modified factor structure. The graded response model showed that some items underperformed in both the original and modified factor structure.Conclusions: The Dutch version of the eHIQ (eHIQ-NL) shows a different factor structure compared with the original English version. Part 1 of the eHIQ-NL consists of 3 subscales: attitudes towards online health information (5 items), comfort with sharing health experiences online (3 items), and usefulness of sharing health experiences online (3 items). Part 2 of the eHIQ-NL consists of 3 subscales: motivation and confidence to act (10 items), information and presentation (13 items), and identification (3 items). [ABSTRACT FROM AUTHOR]

Background: During a 6-week course of (chemo)radiation many head and neck cancer patients have to endure radiotherapy-induced toxicity, negatively affecting patients' quality of life. Pretreatment counseling combined with self-help exercises could be provided to inform patients and possibly prevent them from having speech, swallowing, and shoulder problems during and after treatment. Objective: Our goal was to investigate the feasibility of a multimodal guided self-help exercise program entitled Head Matters during (chemo)radiation in head and neck cancer patients. Methods: Head and neck cancer patients treated with primary (chemo)radiation or after surgery were asked to perform Head Matters at home. This prophylactic exercise program, offered in three different formats, aims to reduce the risk of developing speech, swallowing, shoulder problems, and a stiff neck. Weekly coaching was provided by a speech and swallowing therapist. Patients filled out a diary to keep track of their exercise activity. To gain insight into possible barriers and facilitators to exercise adherence, reports of weekly coaching sessions were analyzed by 2 coders independently. Results: Of 41 eligible patients, 34 patients were willing to participate (83% uptake). Of participating patients, 21 patients completed the program (64% adherence rate). The majority of participants (58%) had a moderate to high level of exercise performance. Exercise performance level was not significantly associated with age (P=.50), gender (P=.42), tumor subsite (P=1.00) or tumor stage (P=.20), treatment modality (P=.72), or Head Matters format (Web-based or paper) (P=1.00). Based on patients' diaries and weekly coaching sessions, patients' perceived barriers to exercise were a decreased physical condition, treatment-related barriers, emotional problems, lack of motivation, social barriers, and technical problems. Patients' perceived facilitators included an increased physical condition, feeling motivated, and social and technical facilitators. Conclusions: Head Matters, a multimodal guided self-help exercise program is feasible for head and neck cancer patients undergoing (chemo)radiation. Several barriers (decreased physical condition, treatment-related barriers) and facilitators (increased physical condition, feeling motivated) were identified providing directions for future studies. The next step is conducting a study investigating the (cost-)effectiveness of Head Matters on speech, swallowing, shoulder function, and quality of life. [ABSTRACT FROM AUTHOR]

Sexual concerns are common after haematopoietic cell transplantation (HCT). Exposure to total body irradiation (TBI), alkylating agent and graft versus host disease (GvHD) can all affect sexual function, leading to problems in sexual desire, arousal and the orgasm phase of the sexual response cycle. In high-risk haematological malignancies, such as acute leukaemia and myelodysplastic syndromes, HCT often offers the highest chance for long-term survival. In addition, these haematological diseases and HCT can have an impact on body image, self-esteem, (sexual) relationship and psychosocial factors, all of which are able to affect sexuality and sexual function. Five years post HCT, 80% of the female survivors and 46% of the male survivors report sexual dysfunction. It has been shown that these patients cope better after having discussed sexual health. While healthcare providers (HCPs) have the responsibility to address sexual issues, it has been demonstrated that 48%-82% HCT recipients reported not having discussed sexual issues with their HCPs and that only one-third of the HCPs routinely discussed sexual issues with their patients. HCPs describe a lack of knowledge and being uncomfortable with the topic as the most important reasons for not addressing sexual functioning. Even so, it would help >90% HCPs if the patient initiated discussing sexual issues. However, to empower patients addressing sexual issues, adequate comprehensive patient information is needed. In an effort to better meet the patients' need, a patient information sheet: 'Information for patients undergoing Hematopoietic Cell Transplantation: the impact of the disease and treatment on sexual function and sexuality', has been created. In this review, we describe what is known about the impact of HCT on sexual function and briefly the management of sexual problems., Competing Interests: The authors declare that they have no conflicts of interest., (© the authors; licensee ecancermedicalscience.)