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Background: Patient reported outcomes (PROs) are being used frequently in clinical practice. PROs often serve several purposes, such as increasing patient involvement, assessing health status, and monitoring and improving the quality-of-care at an aggregated level. However, the lack of representative PRO-data may have implications for all these purposes. This study aims to assess the association of non-administration of (not sending an electronic invite to PRO) and non-response to (not responding to PRO) electronically administered PROs with social inequality in a primary healthcare cancer rehabilitation setting. Furthermore, it examines whether the workflows surrounding PRO have an impact on non-administration and non-response. Methods: This is a cross sectional study using routinely collected data from electronic health records and registers including cancer survivors (CSs) over 18 years booked for an initial consultation in a primary healthcare cancer rehabilitation setting using PROs for systematic health status assessment. During the study period two different PRO platforms were used, each associated with different workflows. Non-administration and non-response rates were calculated for sociodemographic characteristics for each PRO platform. Crude and adjusted odds ratios were calculated using univariate and multivariate logistic regression. Results: In total, 1868 (platform 1) and 1446 (platform 2) CSCSs were booked for an initial consultation. Of these, 233 (12.5%) (platform 1) and 283 (19.6%) (platform 2) were not sent a PRO (non-administration). Among those who received a PRO, 157 (9.6%) on platform 1 and 140 (12.0%) on platform 2 did not respond (non-response). Non-administration of and non-response to PROs were significantly associated with lower socioeconomic status. Moreover, the workflows surrounding PROs seem to have an impact on non-inclusion in and non-response to PROs. Conclusions: Non-administration of and non-response to PROs in clinical practice is associated with determinants of social inequality. Clinical workflows and the PRO platforms used may potentially worsen this inequality. It is important to consider these implications when using PROs at both the individual and aggregated levels. A key aspect of implementing PROs in clinical practice is the ongoing focus on representativeness, including a focus on monitoring PRO administration and response. [ABSTRACT FROM AUTHOR]

Background:Eight years after the Institute of Medicine recommended survivorship care plans (SCPs) for all cancer survivors, this study systematically reviewed the evidence for their use.Methods:Studies evaluating outcomes after implementation of SCPs for cancer survivors were identified by searching databases (MEDLINE, EMBASE and Cochrane). Data were extracted and summarised.Results:Ten prospective studies (2286 survivors) met inclusion criteria (5 randomised controlled trials (RCTs)). Study populations included survivors of breast, gynaecological, colorectal and childhood cancer. Several models of SCP were evaluated (paper based/on-line, oncologist/nurse/primary-care physician-delivered and different templates). No significant effect of SCPs was found on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes in RCTs. Breast cancer survivors with SCPs were better able to correctly identify the clinician responsible for their follow-up care. One study suggested a positive impact on reducing unmet needs. Levels of survivor satisfaction with, and self-reported understanding of, their SCP were very high. Feasibility was raised by health professionals as a significant barrier, as SCPs took 1-4 h of their time to develop.Conclusions:Emerging evidence shows very few measurable benefits of SCPs. Survivors reported high levels of satisfaction with SCPs. Resource issues were identified as a significant barrier to implementation. [ABSTRACT FROM AUTHOR]

Previous studies have shown that a 'Preventive Exercise Program' (PREP) is cost-effective compared to the standard exercise program provided in 'Usual Care' (UC) in patients with advanced head and neck cancer. The current paper specifically estimates the cost-effectiveness of the TheraBite jaw rehabilitation device (TB) which is used as part of the PREP, compared to Speech Language Pathology (SLP) sessions as part of UC, and herewith intents to inform reimbursement discussions regarding the TheraBite device. Costs and outcomes [quality-adjusted life-years (QALYs)] of the TB compared to SLP were estimated using a Markov model of advanced head and neck cancer patients. Secondary outcome variables were trismus, feeding substitutes, facial pain, and pneumonia. The incremental cost-effectiveness ratio (ICER) was estimated from a health care perspective of the Netherlands, with a time horizon of 2 years. The total health care costs per patient were estimated to amount to €5,129 for the TB strategy and €6,915 for the SLP strategy. Based on the current data, the TB strategy yielded more quality-adjusted life-years (1.28) compared to the SLP strategy (1.24). Thus, the TB strategy seems more effective (+0.04) and less costly (−€1,786) than the SLP only strategy. At the prevailing threshold of €20,000/QALY the probability for the TB strategy being cost-effective compared to SLP was 70 %. To conclude, analysis of presently available data indicates that TB is expected to be cost-effective compared to SLP in a preventive exercise program for concomitant chemo-radiotherapy for advanced head and neck cancer patients. [ABSTRACT FROM AUTHOR]

Purpose: From a cancer survivor perspective, the purpose of this paper is to explore what has changed in their lives that they attribute to the disease. The rationale for the study is that evidence of the extent to which cancer disrupts people's lives in the longer term is contradictory. Methods: Written accounts from 40 cancer survivors were analysed using interpretative methods. The researchers drew on the concept of biographical disruption as a framework for analysis. Results: Cancer survivors construct cancer as a biographically disruptive event with ongoing physical and psychosocial impacts. Cancer is constructed as a permanent threat to life which is responsible for increasing their awareness of their own mortality and invoking positive changes to self. These formulations of living with cancer were found across a range of participants, including those who defined themselves as currently free of cancer, those who had recurrence, those who had been diagnosed 5 years ago and those who had been free of cancer for a long time. Conclusions: This study adds to the body of literature exploring how to enhance supportive care for cancer survivors by reflecting on biographical disruption and continuity, and the complexities within individual constructions of changes in life that they attribute to cancer. Cancer survivors should be given opportunities to articulate the impact of cancer, thus giving legitimate space to talk about cancer's ongoing resonance on life so that problems and difficulties are not dismissed or trivialised. [ABSTRACT FROM AUTHOR]

Purpose: Studies in exercise oncology are increasingly evaluating the implementation of cancer-specific exercise programming in real-world settings. Evaluating current implementation efforts and identifying current research gaps may inform future implementation. This scoping review explores studies implementing cancer-specific exercise programs to determine their pragmatic characteristics and evaluate potential for translation into practice. Methods: A systematic literature search was conducted using five databases (up to July 2020) to identify implementation studies that used qualitative or quantitative methods. Program pragmatism was evaluated using the PRECIS/RE-AIM tool. Results: Fourteen articles were included for review. While programs were moderately pragmatic (average: 3.4; range: 2.8–4.2), variability was observed between scoring domains. Programs scored higher (more pragmatic) in domains typical for effectiveness studies, including participant eligibility, follow-up intensity, primary trial outcome, and analysis of primary outcome. In contrast, programs scored lower (less pragmatic) in domains aligned with implementation science, including intervention flexibility, adoption, implementation, and maintenance. Limited information was reported regarding program fidelity, adaptations, and maintenance/sustainability. Conclusion: Researchers should consider the pragmatism of interventions, the nuances of program adoption and implementation at the setting level, and the transition and integration of programming into the healthcare system. Future studies may benefit from the inclusion of decision-makers and implementation experts and shifting focus towards flexible programming. PRECIS/RE-AIM may facilitate the evaluation of programs throughout the study design and implementation process. Implications for Cancer Survivors: The implementation of pragmatic exercise programs that are both scalable and sustainable is needed so that cancer survivors can experience exercise-related benefits beyond research settings. [ABSTRACT FROM AUTHOR]

Purpose: To develop and preliminarily evaluate a Social Difficulties Inventory (SDI) for use in oncology practice.Methods: Item generation from patients (n = 96), staff (n = 49) and the literature. Questions constructed and pre-tested (n = 42) resulting in a 22-item questionnaire. Psychometric evaluation (n = 271) assessed frequency of endorsement, factor structure, summated scales and construct validity followed by randomisation to criterion validity or test-retest arms.Results: Items met preset frequency of endorsement criteria. Factor analysis revealed a four-factor structure, three clearly definable, (1) Physical ability, (2) Providing for the family and (3) Contact with others, explaining 45.8% variance. Summated scales developed from these demonstrated good reliability (Cronbach's alpha > 0.7) and were used to test and confirmed construct validity. Several comparators from the Life Events and Difficulties Schedule (LEDS) and Cancer Rehabilitation Evaluation System Short Form (CARES-SF) tested criterion validity and majority agreements were moderate to good. Test-retest reliability was good with most kappa values > 0.6. One item was eliminated resulting in a 21-item questionnaire.Conclusion: The SDI is relevant and easy to understand. Initial psychometric evaluation was encouraging. Ongoing work to evaluate the clinical meaning and utility of the instrument and to examine the relationships between SDI scores and clinical outcomes will provide guidance about its usefulness as an assessment tool in routine oncology practice. [ABSTRACT FROM AUTHOR]

Purpose The proportion of self-employed people in the workforce is growing. However, most research on work participation among cancer survivors has focused on salaried workers. We aimed to explore how self-employed people experience work during and after cancer treatment. Methods In this qualitative study, we conducted semi-structured interviews with seven self-employed people who had been treated for cancer. To provide a variety of perspectives on work-related aspects of self-employed cancer survivors we also interviewed seven counselors in the Norwegian Labour and Welfare Administration (NAV) who had long experience in supporting self-employed people and cancer patients around work participation. The interviews were transcribed verbatim and thematic analysis was undertaken. Results Five themes related to owning a business during and after cancer treatment emerged: entrepreneurship and engagement; cancer treatment and late-effects; business-related worries; shame; and support. Because of high job engagement and high autonomy the self-employed survivors often worked during treatment. While working could provide a sense of normalcy and a distraction from cancer, it was also essential to keep the business running. Survivors struggled with several work-related issues (e.g. high work demands, low work ability), but financial issues related to running their business caused particular worry. Getting cancer and, consequently, struggling with financial problems elicited a sense of shame that was closely connected to their strong identity as (successful) self-employed business (wo)men. Conclusion To support self-employed cancer survivors to retain work following a cancer diagnosis it is necessary to focus on the specific challenges faced by this group of workers, particularly related to financial issues and keeping the business afloat. Support measures to secure production and thus prevent loss of customers and bankruptcy are needed. It is important for health and social care personnel to be aware that self-employed cancer survivors may suffer from shame related to the cancer, low work ability and financial struggles, but that they may have difficulties talking about this shame. [ABSTRACT FROM AUTHOR]

Purpose: Following head and neck cancer (HNC) treatment, individuals experience an array of side effects which can impact on physical, emotional, and practical aspects of their lives. Responsive, supportive rehabilitation services are therefore essential to address ongoing survivorship needs. This study examined the nature of patient-reported goals from acute to long-term post-treatment, to inform design/delivery of future rehabilitation services.Methods: Using a cross-sectional cohort design, 91 patients between 2 weeks and 5 years of post non-surgical HNC treatment (acute n = 29; sub-acute n = 28; long-term n = 34), provided their top four rehabilitation goals considering any aspect of their lives. Content analysis was used to categorise responses at each time point.Results: Three core categories of patient goals were identified relating to: (1) treatment side effects (TSE), (2) overall health (OH), and (3) living life (LL). TSE goals were a priority during the acute and sub-acute phases, with less focus long-term. LL goals were prevalent across all time points, though increased in the long-term. Approximately a third of all goals at each time point related to OH.Conclusions: A variety of rehabilitation goals were identified, and the focus shifted over time. These data highlight the importance of changing the focus of rehabilitation as patients' priorities vary over time. Early multidisciplinary care from allied health services is crucial to provide support with managing side effects and returning to daily activities. In the long-term, greater input from services to address health, nutrition, leisure, and fitness goals may be more beneficial. [ABSTRACT FROM AUTHOR]

Background: People with cancer may experience change in what constitutes quality of life (QOL) over time as a result of the cancer progression (true change) or adaptation to the experience, considered as a response shift phenomenon. As individualized measures are ideally suited to explore response shift, this study aimed to estimate the extent to which reconceptualization response shift occurred over time in a cancer population and the impact of this response shift on estimates of change on QOL measures.Methods: Ninety-seven people with advanced cancer completed the study measures including the Patient-Generated Index (PGI) at diagnosis (T0) and 1 year later (T1). The response shift indicator was the change in the number of areas nominated (range - 4 to + 3). Multivariate linear regression was used to estimate the effect of changing areas on change in the PGI score, single indicators of global QOL, and the EQ-5Dindex adjusted for age and sex.Results: Approximately 72% of people in this sample either added or dropped areas over time. People who dropped more than two areas had higher PGI scores at T1 than T0 while people who added areas showed low PGI score.Conclusion: The results are consistent with the PGI framework as areas nominated tend to focus on negative aspects of QOL. [ABSTRACT FROM AUTHOR]

Despite growing evidence in support of mindfulness as an underlying mechanism of mindfulness-based interventions (MBIs), it has been suggested that nonspecific therapeutic factors, such as the experience of social support, may contribute to the positive effects of MBIs. In the present study, we examined whether change in mindfulness and/or social support mediated the effect of Mindfulness-Based Cancer Recovery (MBCR) compared to another active intervention (i.e. Supportive Expressive Group Therapy (SET)), on change in mood disturbance, stress symptoms and quality of life. A secondary analysis was conducted of a multi-site randomized clinical trial investigating the impacts of MBCR and SET on distressed breast cancer survivors (MINDSET). We applied the causal steps approach with bootstrapping to test mediation, using pre- and post-intervention questionnaire data of the participants who were randomised to MBCR ( n = 69) or SET ( n = 70). MBCR participants improved significantly more on mood disturbance, stress symptoms and social support, but not on quality of life or mindfulness, compared to SET participants. Increased social support partially mediated the impact of MBCR versus SET on mood disturbance and stress symptoms. Because no group differences on mindfulness and quality of life were observed, no mediation analyses were performed on these variables. Findings showed that increased social support was related to more improvement in mood and stress after MBCR compared to support groups, whereas changes in mindfulness were not. This suggests a more important role for social support in enhancing outcomes in MBCR than previously thought. [ABSTRACT FROM AUTHOR]

It is widely published that physical, psychological, and social stressors adversely affect many individuals who are diagnosed with cancer, influencing their experience of treatment and perhaps, the quality of life after treatment is complete. No one is prepared for this battle, yet most patients are forced to make split-second decisions that are critical to their care. This case study highlights the mindfulness approach taken by one social worker to help a young woman during her journey with cancer. By guiding her through gentle yoga postures, yoga breathing, and meditation this patient learned how to take back some measure of control in her recovery, address her illness-related stress, and possibly enhance the quality of her life during treatment. As more clinicians combine conventional best practices with complementary healing therapies, they may provide tools any patient can use to instill hope and promote wellness during this most challenging time and beyond. [ABSTRACT FROM AUTHOR]

Purpose: To investigate associations between cancer survivors' sex, age, and diagnosis in relation to their (1) need for rehabilitation, (2) participation in rehabilitation activities, and (3) unmet needs for rehabilitation in a 14-month period following date of diagnosis. Methods: A population-based cohort study was performed on incident cancer patients diagnosed from 1 October 2007 to 30 September 2008. Fourteen months after diagnosis, participants completed a questionnaire developed to measure the aspects of rehabilitation. Logistic regression analyses were used to explore the association between sex, age, and diagnosis, and the outcome variables for rehabilitation. Results: A total of 3,439 patients participated, yielding an overall response rate of 70%. One third of the cancer patients reported a need for physical rehabilitation and one third for psychological rehabilitation. Half of the patients participated in at least one activity. Unmet needs were most often reported in psychological, sexual, and financial areas. Women expressed more needs, participated more often in rehabilitation activities, and had, to a higher extent, their emotional needs fulfilled. Breast cancer patients participated more often in physical rehabilitation. Elderly who expressed rehabilitation needs more often had them unresolved. Conclusions: A substantial variation in rehabilitation needs, participation in activities, and unmet needs in relation to sex, age, and cancer type was observed. Cancer care ought to systematically address the wide range of needs in all groups through integration of systematic needs assessment and targeted supply of offers. [ABSTRACT FROM AUTHOR]

Purpose: The purpose was twofold: (1) to develop a comprehensive profile of patients discharged from an inpatient oncology rehabilitation unit and (2) to explore the relationships between patient characteristics and functional status. Methods: A retrospective review of electronic data from all patients discharged from oncology rehabilitation between November 1, 2008, and March 31, 2010, was conducted. Data elements included age, sex, primary language, living arrangements, cancer diagnosis, comorbidities, and admission and discharge Functional Independence Measure (FIM) scores. Descriptive statistics were compiled for all data elements. General linear regression was conducted to determine the descriptors independently associated with FIM discharge and FIM change scores. Results: There were 153 eligible records. The patients' age ranged from 38 to 97 years ( M = 72.6, SD = 12.9); 59.5% were women, and 39.3% lived alone prior to hospitalization. The most common diagnoses were colorectal cancer ( n = 45, 28.8%), metastatic disease ( n = 24, 15.7%), and cancer of the urinary organs ( n = 14, 9.2%). Service goals were met for 77.1%. Patients improved an average of 17.1 (SD = 8.8) points on the FIM. Being older and having a diagnosis of brain or uterine cancer were associated with lower FIM™ change scores. Conclusions: In this sample, the majority of patients were older women, and many lived alone. While the group as a whole made significant functional gains, those who were younger improved more. Having a diagnosis of uterine or brain cancer was associated with lower functional change scores. This study was limited by a small sample size and the retrospective design; however, the results provide a foundation for future prospective research. [ABSTRACT FROM AUTHOR]

Background: Two million people in the UK had a cancer diagnosis at the end of 2008. Understanding the number of people diagnosed with cancer with and without health needs is valuable information that can be used to inform service planning, treatment provision and support for people at the right time in the right place as demand grows over time.Methods: Using available data and clinically led assumptions about patient need and outcomes, we make indicative estimates. We quantify, for three common cancers, the number of people in each of the five main identified phases of the cancer care pathway.Results: Estimates are provided for each phase of the pathway for breast, colorectal and lung cancers. We estimate that there are nearly 575,000 women a year with breast cancer in the care pathway at some point in the year, 8% are in the rehabilitation phase and 4% in the progressive illness phase. This compares to nearly 270,000 with colorectal and around 95,000 with lung cancer.Conclusion: Using readily available data, we estimate the numbers of patients with different health needs. These numbers could inform the targeting of resources for service providers. [ABSTRACT FROM AUTHOR]

Gendered definitions of care influence breast cancer survivors’ coping strategies, sense of entitlement to care, and ultimately their capacity to receive care. Using qualitative data from 60 intensive interviews, this study examines how gendered definitions of care influence women’s experiences as care-receivers. Findings indicate that negotiating gender boundaries to care for the self is both empowering and stigmatizing. Women with breast cancer are required to break gender norms that stress compliance, nurturing, and putting the needs of others first to prioritize their own needs for care. Concurrently, they take on additional nurturing roles to provide support to other women with breast cancer, relinquishing to some degree the individualistic approach to life they found necessary to cope with their illness in the first place. [ABSTRACT FROM AUTHOR]

Management and care of men with breast cancer is based on that developed for women. Our study reports that men have specific issues regarding certain aspects of their breast cancer experience, including diagnosis, disclosure, support and gender-specific information, and offers suggestions for improved patient care. [ABSTRACT FROM AUTHOR]

The author talks about cancer rehabilitation for cancer survivors which include interventions to improve physical performance, nutrition, and mental health by referring to the study titled "Effects of Exercise during Chemotherapy on Chemotherapy-Induced Peripheral Neuropathy: A Multicenter, Randomized Controlled Trial," by researcher Kleckner and colleagues. Topics discussed include medical exercise to improve endurance capacity, assessment of contraindication potential, and dysesthesia.