The impact of cancer survivorship care plans on patient and health care provider outcomes:A current perspective

Background: To help the growing number of cancer survivors deal with the challenges of cancer survivorship, survivorship care plans (SCPs) were recommended by the Institute of Medicine (IOM) in 2006. The SCP is a formal document that contains both a tailored treatment summary and a follow-up care plan. Since the IOM recommendation 10 years ago, the implementation in daily clinical practice is minimal. Several studies have investigated the effects of SCPs on patient-reported outcomes and oncology and primary care providers (PCPs), but the quantity and quality of these studies are limited. Results: The first four randomized trials comparing SCP delivery with usual care failed to show a positive effect on satisfaction with information provision, satisfaction with care, distress or quality of life. SCPs did improve the amount of information provided and communication of PCPs with medical specialists and patients. A recent small trial that changed the focus from SCP as primarily an information delivery intervention to a behavioral intervention did observe positive effects on self-reported health, lower social role limitations and a trend towards greater self-efficacy. Gaps in knowledge about SCPs include uncertainty about content and length of the SCP; whether it should be delivered online or on paper; the timing and frequency of delivery; which health care provide should deliver SCP care. Finally, cost-effectiveness of SCP interventions has received limited attention. Conclusion: Currently, there is not enough evidence to warrant large-scale implementation of SCPs, or to abandon SCPs altogether. Emphasis on the SCP process and survivor engagement, supporting self-management may be an important way forward in SCP delivery. Whether this is beneficial and cost-effective on the long term and among different groups of cancer survivors needs further investigation

The impact of participation in online cancer communities on patient reported outcomes:Systematic review

Background: In recent years, the question of how patients’ participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways. Objectives: This study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects. Methods: A computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed. Last search was conducted in June 2017. Studies with the following terms were included: (cancer patient) and (support group or health communities) and (online or Internet). A total of 21 studies were included and independently assessed by 2 investigators using an 11-item quality checklist. Results: The methodological quality of the selected studies varied: 12 were of high quality, eight were of adequate quality, and only one was of low quality. Most of the respondents were women (about 80%), most with breast cancer; their mean age was 50 years. The patients who were active in online support groups were mostly younger and more highly educated than the nonusers. The investigated PROs included general well-being (ie, mood and health), anxiety, depression, quality of life, posttraumatic growth, and cancer-related concerns. Only marginal effects—that is, PRO improvements—were found; in most cases they were insignificant, and in some cases they were contradictory. Conclusions: The main shortcoming of this kind of study is the lack of methodological instruments for reliable measurements. Furthermore, some patients who participate in online communities or interact with peers via Internet do not expect to measure changes in their PROs. If cancer survivors want to meet other survivors and share information or get support, online communities can be a trustworthy and reliable platform to facilitate opportunities or possibilities to make this happen. Keywords: cancer; survivors; patient reported outcomes; Internet; support group

The course of peripheral neuropathy and its association with health-related quality of life among colorectal cancer patients

Purpose:  To gain more insight into the course of chemotherapy-induced peripheral neuropathy (CIPN) and its impact on health-related quality of life (HRQoL) in a population-based sample of colorectal cancer (CRC) patients up to 2 years after diagnosis.  Methods:  All newly diagnosed CRC patients from four hospitals in the Netherlands were eligible for participation in an ongoing prospective cohort study. Patients (n = 340) completed questions on CIPN (EORTC QLQ-CIPN20) and HRQoL (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis. Results: Among chemotherapy-treated patients (n = 105), a high sensory peripheral neuropathy (SPN) level was reported by 57% of patients at 1 year, and 47% at 2-year follow-up, whereas a high motor peripheral neuropathy (MPN) level was reported by 47% and 28%, at years 1 and 2, respectively. Linear mixed model analyses showed that SPN and MPN symptoms significantly increased from baseline to 1-year follow-up and did not return to baseline level after 2 years. Patients with a high SPN or MPN level reported a worse global quality of life and a worse physical, role, emotional, cognitive, and social functioning compared with those with a low SPN or MPN level.  Conclusions: Future studies should focus on understanding the mechanisms underlying CIPN so targeted interventions can be developed to reduce the impact of CIPN on patient’s lives.  Implications for cancer survivors:  Patients need to be informed of both CIPN and the impact on HRQoL

Cardiovascular co morbidity in cancer patients:The role of psychological distress

Due to aging of the population and cardiotoxic cancer treatment, there is an increasing group of patients with cancer and co-morbid cardiovascular disease (CVD). In order to find a balance between the risk of undertreating the malignancy on the one hand and inducing CVD on the other hand, CVD risk stratification at the time of cancer diagnosis and knowledge on the pathway for developing incident CVD in cancer patients is vital. In this paper, we propose an adapted multiple-hit hypothesis for developing CVD in cancer patients describing that patients with cancer are exposed to a series of sequential or concurrent events that together make them more vulnerable to reduced cardiovascular reserves, development of incident CVD and ultimately death. We highlight the possible impact of psychological distress secondary to a cancer diagnosis and/or treatment, which in turn may increase the risk of incident CVD in patients diagnosed with cancer. Furthermore, we discuss potential behavioral and pathophysiological mechanisms underlying the link between psychological distress and the pathophysiology of incident CVD. In addition, key unanswered questions for future research are posed. In the future, researching the adapted multiple-hit hypothesis for developing CVD among cancer patients will hopefully advance the care of cancer patients by finding some of the missing pieces of the puzzle. To do so, we need to focus on minimizing cardiovascular risk and promoting cardiovascular health in cancer patients by addressing the knowledge gaps formulated in this paper

Illness perceptions are associated with mortality among 1552 colorectal cancer survivors:A study from the population-based PROFILES registry

Purpose Cancer survivors construct perceptions of illness as a (mal)adaptive mechanism. These perceptions motivate/drive subsequent self-management behaviors toward symptoms and treatment that influence health outcomes. Negative illness perceptions have been associated with increased mortality in other chronically ill groups. However, this association is under-researched in cancer survivors. We aimed to explore the association between illness perceptions and mortality in stage I–III progression-free colorectal cancer (CRC) survivors. Methods We used data from the population-based Patient Reported Outcomes Following Initial treatment and Long Term Evaluation of Survivorship (PROFILES) registry of two CRC survivorship studies conducted in 2009 and 2010. We accessed clinical data from the Netherlands Cancer Registry, and mortality data from municipal personal records database. Follow-up was until 31 December 2014. Survivors (n = 1552) completed the Brief Illness Perception Questionnaire. Cox proportional hazard models estimated the association between illness perceptions and mortality. Results Negative illness perceptions on consequences (adjusted hazard ratio (HRadj) 1.60, 95 % confidence interval (CI) 1.14–2.25) and emotion (HRadj 1.65, 95 % CI 1.18–2.31) were associated with higher mortality, after adjusting for demographic, clinical, and lifestyle factors. Smoking and inadequate physical activity were independently associated with mortality for all Brief Illness Perception Questionnaire (BIPQ) dimensions. Conclusions Survivors’ perceptions of their illness are important as these perceptions may influence health outcomes during survivorship period. Clinical practice needs to identify and address maladaptive illness perceptions to support more adaptive self-management behaviors and enhance survivorship. Implications for cancer survivors Cancer survivors may benefit from interventions that address potentially maladaptive perceptions and encourage more adaptive self-management behaviors

Using the behavior change wheel to identify and understand key facilitators and barriers for lifestyle care for postmenopausal breast cancer survivors:A delphi-study

BackgroundOptimal approaches to promote sustained adherence to lifestyle and bodyweight recommendations in postmenopausal breast cancer (PMBC) survivors are lacking.PurposeThis Delphi-study aims to identify and understand expert-opinion on potential barriers and facilitators for promoting adherence to these lifestyle and bodyweight recommendations in (clinical) care for PMBC survivors, and to determine potential effective intervention strategies.MethodsThe expert panel consisted of oncology Health Care Professionals (HCPs) (N = 57), patient advocates (N = 5), and PMBC survivors (N = 38). They completed three questionnaires: Q1—idea generation; Q2—validation and prioritization; Q3—ranking. The Behavior Change Wheel was used as theoretical framework for analysis. Thematic analysis was applied to identify key overarching themes based on the top-ranked facilitators and barriers. Potential Behavior Change Techniques (BCTs) and intervention strategies were identified using the Behavior Change Technique Taxonomy version 1 and the Behavior Change Wheel.ResultsEleven core categories of key barriers/facilitators for the promotion of adherence to recommendations for lifestyle and bodyweight among PMBC survivors were identified. For each core category, relevant BCTs and practical potential intervention strategies were selected based on suggestions from the expert panel. These included: increasing knowledge about the link between lifestyle and cancer; enabling self-monitoring of lifestyle behaviors followed by evaluation; offering group lifestyle counseling for PMBC survivors, enhancing social support for favorable lifestyle behaviors; and stimulating multidisciplinary collaboration among HCPs.ConclusionsFindings provide valuable insight for the development of interventions changing behavior of PMBC survivors and HCPs toward increased healthy lifestyle (support) behavior

Prospectively measured lifestyle factors and BMI explain differences in health-related quality of life between colorectal cancer patients with and without comorbid diabetes

Purpose This study aimed to assess the longitudinal association between lifestyle factors, body mass index (BMI), and health-related quality of life (HRQoL) among colorectal cancer patients with (CRCDM+) and without diabetes (CRCDM−). Methods Data from a longitudinal study among CRC patients diagnosed between 2000 and 2009 were used. Clinical characteristics were retrieved from the Netherlands Cancer Registry and questionnaires were sent in 2010, 2011, and 2012 using the Patient Reported Outcomes Following Initial Treatment and Long term Evaluation of Survivorship (PROFILES) registry. Lifestyle (including moderate-to-vigorous physical activity (MVPA), smoking and alcohol use), BMI, diabetes status, and HRQoL were assessed in the questionnaire. Results One thousand seven hundred thirty-nine (49 %) patients responded to ≥2 questionnaires, of whom 126 CRCDM+ and 789 CRCDM− patients were included. CRCDM+ patients had a higher BMI (29.1 ± 4.2 vs. 26.4 ± 3.7 kg/m2), whereas the number of alcohol users was lower (50 vs. 70 %, p value <0.0001) among CRCDM+ as compared to CRCDM− patients. Analyses adjusted for sociodemographic and cancer characteristics showed that CRCDM+ patients reported statistically significantly lower physical function (beta = -5.76; SE = 1.67), global QoL (beta = -4.31; SE = 1.48), and more symptoms of fatigue (beta = 5.38; SE = 1.95) than CRCDM− patients. However, these effects disappeared after adjustments for lifestyle factors and BMI which were all significant predictors of HRQoL. Additional adjustment for comorbidity further attenuated the main effect of DM on HRQoL. Conclusions Diabetes was not independently associated with HRQoL but deteriorated HRQoL among CRCDM+ patients seem to be explained by an unhealthier lifestyle and other comorbid conditions. Moreover, residual confounding cannot be ruled out.KeywordsColorectal cancer, Diabetes, Lifestyle, Health-related quality of lif

Comparing cancer survivors in population-based samples with those in online cancer communities:Cross-sectional questionnaire study

BACKGROUND: Most Western countries have websites that provide information on cancer and the opportunity to participate in online cancer communities (OCCs). The number of patients with cancer that participate in these OCCs is growing. These patients are relatively easy to approach for research purposes. OBJECTIVE: The objective of this study is to determine the differences and similarities between survivors of cancer in population-based samples and survivors participating in OCCs who use the internet in relation to their illness. METHODS: In 2017, we drew a sample of 539 population-based patients and 531 OCC patients. The population-based patients were sent a paper-based questionnaire, and the OCC patients were sent the same questionnaire on the web. In the questionnaire, we asked patients about their sociodemographics, internet use, sources of information, media use, and wishes regarding future internet use for health care–related purposes, and the effect of internet use on their health care consumption. RESULTS: The response rate of population-based internet users was 47% (233/496), and that of the OCC group was 40.3% (214/531). The OCC group had a significantly higher education level (P<.001), was younger (P<.001), had more survivors that were employed (P<.001), and attached greater importance to the internet (171/214, 79.9% vs 126/233, 54.1%; P<.001) and fellow survivors (107/214, 50% vs 60/233, 25.8%; P<.001). Compared with the population-based group, the OCC group reported more intensive internet use immediately after diagnosis, during treatment, and during follow-up (P<.001 in each case). There were similarities in terms of the relative importance that survivors attach to the various sources of information, the topics on which they seek information, and their wishes for future eHealth possibilities. The OCC group reported a greater need to participate in a web-based class or chat with others (92/214, 43% vs 44/233, 18.9%). CONCLUSIONS: We conclude that survivors who are members of an OCC are not representative of survivors of cancer in general. There are significant differences in sociodemographic characteristics, internet use during their treatment journey, internet search frequency during their cancer journey, and participation wishes. Using web-based information and communication can support shared decision-making and may facilitate the active participation of patients during their treatment. For research purposes, it is important to take the bias in OCC groups into account

Quality of life of older rectal cancer patients is not impaired by a permanent stoma

AbstractBackgroundThe current study was undertaken to investigate the impact of a stoma on the HRQL with a special focus on age.Materials and methodsUsing the Eindhoven Cancer Registry, rectal cancer patients diagnosed between 1998 and 2007 in 4 hospitals were identified. All patients underwent TME surgery. Survivors were approached to complete the SF-36 and EORTC QLQ-C38 questionnaires. HRQL scores of the four groups, stratified by stoma status (stoma/no stoma) and age at operation (<70 and ≥70), were compared. The SF-36 and the QLQ-CR38 sexuality subscale scores of the survivors were compared with an age- and sex-matched Dutch norm population.ResultsMedian follow-up of 143 patients was 3.4 years. Elderly had significantly worse physical function (p = 0.0003) compared to younger patients. Elderly (p = 0.005) and patients without a stoma (p = 0.009) had worse sexual functioning compared to younger patients and patients with a stoma. Older males showed more sexual dysfunction (p = 0.01) when compared to younger males. In comparison with the normative population, elderly with a stoma had worse physical function (p < 0.01), but slightly better mental health (p < 0.05). Elderly without a stoma had better emotional role function (p < 0.01), and younger patients had worse sexual functioning and enjoyment (both p < 0.0001).ConclusionsOlder patients with a stoma have comparable HRQL to older patients without a stoma or the normative population, indicating the feasibility of a permanent stoma for elderly patients with a low situated rectal carcinoma. The negative impact of treatment on sexual functioning as found in the current study calls for further attention to alleviate this problem in sexually active patients