Cornelia F. van Uden-Kraan

Determinants of Engagement in Face-to-Face and Online Patient Support Groups

Background Although peer-to-peer contact might empower patients in various ways, studies show that only a few patients actually engage in support groups. Objective The objective of our study was to explore factors that facilitate or impede engagement in face-to-face and online peer support, using the Theory of Planned Behavior. Methods A questionnaire was completed by 679 patients being treated for arthritis, breast cancer, or fibromyalgia at two Dutch regional hospitals. Results Our results showed that only a minority of the patients engaged in organized forms of peer support. In total 10% (65/679) of the respondents had engaged in face-to-face meetings for patients in the past year. Only 4% (30/679) of the respondents had contact with peers via the Internet in the past year. Patients were more positive about face-to-face peer support than about online peer support (P < .001). In accordance with the Theory of Planned Behavior, having a more positive attitude (P < .01) and feeling more supported by people in the social environment (P < .001) increased the intention to participate in both kinds of peer support. In addition, perceived behavioral control (P = .01) influenced the intention to participate in online peer support. Nevertheless, the intention to engage in face-to-face and online peer support was only modestly predicted by the Theory of Planned Behavior variables (R 2 = .33 for face-to-face contact and R 2 = .26 for online contact). Conclusion Although Health 2.0 Internet technology has significantly increased opportunities for having contact with fellow patients, only a minority seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact.

Effectiveness and cost-effectiveness of meaning-centered group psychotherapy in cancer survivors: protocol of a randomized controlled trial

BackgroundMeaning-focused coping may be at the core of adequate adjustment to life after cancer. Cancer survivors who experience their life as meaningful are better adjusted, have better quality of life and psychological functioning. Meaning-Centered Group Psychotherapy for Cancer Survivors (MCGP-CS) was designed to help patients to sustain or enhance a sense of meaning and purpose in their lives. The aim of the proposed study is to evaluate the effectiveness and cost-effectiveness of MCGP-CS.Methods/DesignSurvivors diagnosed with cancer in the last 5 years and treated with curative intent, are recruited via several hospitals in the Netherlands. After screening, 168 survivors are randomly assigned to one of the three study arms: 1. Meaning-Centered Group Psychotherapy (MCGP-CS) 2. Supportive group psychotherapy (SGP) 3. Care as usual (CAU). Baseline assessment takes place before randomisation, with follow up assessments post-intervention and at 3, 6 and 12 months follow-up. Primary outcome is meaning making (PMP, PTGI, SPWB). Secondary outcome measures address quality of life (EORTC-30), anxiety and depression (HADS), hopelessness (BHS), optimism (LOT-R), adjustment to cancer (MAC), and costs (TIC-P, EQ-5D, PRODISQ).DiscussionMeaning-focused coping is key to adjustment to life after cancer, however, there is a lack of evidence based psychological interventions in this area. Many cancer survivors experience feelings of loneliness and alienation, and have a need for peer support, therefore a group method in particular, can be beneficial for sustaining or enhancing a sense of meaning. If this MCGP-CS is effective for cancer survivors, it can be implemented in the practice of psycho-oncology care.Trial registrationNetherlands Trial Register, NTR3571

Multimodal Guided Self-Help Exercise Program to Prevent Speech, Swallowing, and Shoulder Problems Among Head and Neck Cancer Patients: A Feasibility Study

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.

Meaning Making in Cancer Survivors: A Focus Group Study

Background Confrontation with a life-threatening disease like cancer can evoke existential distress, which can trigger a search for meaning in people after having survived this disease. Methods In an effort to gain more insight in the meaning making process, we conducted four focus groups with 23 cancer survivors on this topic. Participants responded to questions about experienced meaning making, perceived changes in meaning making after cancer and the perceived need for help in this area. Results Most frequently mentioned meaning making themes were relationships and experiences. We found that, in general, cancer survivors experienced enhanced meaning after cancer through relationships, experiences, resilience, goal-orientation and leaving a legacy. Some participants, however, also said to have (also) experienced a loss of meaning in their lives through experiences, social roles, relationships and uncertainties about the future. Conclusions The results indicated that there is a group of cancer survivors that has succeeded in meaning making efforts, and experienced sometimes even more meaning in life than before diagnosis, while there is also a considerable group of survivors that struggled with meaning making and has an unmet need for help with that. The results of this study contribute to develop a meaning centered intervention for cancer survivors.

Experiences and attitudes of Dutch rheumatologists and oncologists with regard to their patients’ health-related Internet use

The objective of this study is to explore the experiences and attitudes of rheumatologists and oncologists with regard to their patients’ health-related Internet use. In addition, we explored how often physicians referred their patients to health-related Internet sites. We sent a questionnaire to all the rheumatologists and oncologists in the Netherlands. The questionnaire included questions concerning demographics, experiences with patients’ health-related Internet use, referral behavior, and attitudes to the consequences of patients’ health-related Internet use (for patients themselves, the physician-patient relationship and the health care). The response rate was 46% (N = 238). Of these respondents, 134 practiced as a rheumatologist and 104 as an oncologist. Almost all physicians encountered their patients raising information from the Internet during a consultation. They were not, however, confronted with their patients’ health-related Internet use on a daily basis. Physicians had a moderately positive attitude towards the consequences of patients’ health-related Internet use, the physician-patient relationship and the health care. Oncologists were significantly less positive than rheumatologists about the consequences of health-related Internet use. Most of the physicians had never (32%) or only sometimes (42%) referred a patient to a health-related Internet site. Most physicians (53%) found it difficult to stay up-to-date with reliable Internet sites for patients. Physicians are moderately positive about their patients’ health-related Internet use but only seldom refer them to relevant sites. Offering an up-to-date site with accredited websites for patients might help physicians refer their patients.

Effects of eHealth for patients and informal caregivers confronted with cancer: a meta-review.

BACKGROUND eHealth can be defined as information provision about illness or health care and/or support for patients and/or informal caregivers, using the computer or related technologies. eHealth interventions are increasingly being used in cancer care, e.g. to support patients and informal caregivers in managing symptoms and problems in daily life. OBJECTIVES To synthesize evidence from systematic reviews on the effects of eHealth for cancer patients or their informal caregivers. MATERIALS AND METHODS A systematic meta-review, in the sense of a systematic review of reviews, was conducted. Searches were performed in PubMed, Embase, CINAHL, PsycINFO, and the Cochrane Library. All steps in the review process were either performed by two reviewers independently or checked by a second reviewer. Disagreements were resolved by consensus. RESULTS Ten systematic reviews were included. All reviews focused on the effects of eHealth for patients and none on effects for informal caregivers. Except for one review of high methodological quality, all reviews were of moderate methodological quality. Evidence was found for effects on perceived support, knowledge levels, and information competence of cancer patients. Indications of evidence were found for health status and healthcare participation. Findings were inconsistent for outcomes related to decision-making, psychological wellbeing, depression and anxiety, and quality of life. No evidence was found for effects on physical and functional wellbeing. CONCLUSION There is evidence for positive effects of eHealth on perceived support, knowledge, and information competence of cancer patients. For effects on other outcomes in cancer patients, findings are mainly inconsistent or lacking. This meta-review did not find relevant reviews focusing on or including the effects of eHealth on informal caregivers, which seems a rather unexplored area.

Meaning-centered group psychotherapy in cancer survivors: a feasibility study

Nadia van der Spek*, Cornelia F. van Uden-Kraan, Joël Vos, William Breitbart, Rob A. E. M. Tollenaar, Christi J. van Asperen, Pim Cuijpers and Irma M. Verdonck-de Leeuw Department of Clinical Psychology, VU University, Amsterdam, The Netherlands Department of Otolaryngology Head & Neck Surgery, VU University Medical Center, Amsterdam, The Netherlands Counselling Psychology, Roehampton University, London, United Kingdom Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, USA Department of Surgery, Leiden University Medical Center, Leiden, The Netherlands

Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers.

PurposeGlioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients’ and caregivers’ attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options.MethodsIn total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.ResultsAdvantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments.ConclusionsInformal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise.

Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

Primary care-led survivorship care for patients with colon cancer and the use of eHealth: a qualitative study on perspectives of general practitioners

Objectives The aim of this study was to explore the perspectives of general practitioners (GPs) regarding their current and future role in survivorship care of patients with colon cancer, and to assess their perspectives on patients’ self-management capacities and the value of the eHealth application Oncokompas2.0 used by patients. Setting GPs from the central part of the Netherlands were interviewed at their location of preference. Participants 20 GPs participated (10 men, 10 women, age range 34–65 years, median age 49.5 years). The median years of experience as a GP was 14.5 years (range 3–34 years). Results GPs indicated attempting to keep in contact with patients after colon cancer treatment and mentioned being aware of symptoms of recurrent disease. Most participants would have liked to be more involved and expected to be able to provide survivorship care of colon cancer. Requirements mentioned were agreements with secondary care and a protocol. GPs considered Oncokompas2.0, which stimulates patients to structure their own survivorship care, as a useful additional tool for a specific group of patients (ie, young and highly-educated patients). Conclusions Based on the perspectives of the GPs, survivorship care of colon cancer in primary care is deemed feasible and the use of an eHealth application such as Oncokompas2.0 is expected to benefit specific groups of patients after colon cancer treatment.