Patient-initiated follow-up in women with early-stage endometrial cancer: A long-term follow-up of the OPAL trial.

OBJECTIVE: A long-term follow-up of the OPAL trial to compare the effect of patient-initiated (PIFU) versus hospital-based (HBFU) follow-up on fear of cancer recurrence (FCR), quality of life (QoL) and healthcare use after 34 months of follow-up. DESIGN: Pragmatic, multicentre randomised trial. SETTING: Four Danish departments of gynaecology between May 2013 and May 2016. POPULATION: 212 women diagnosed with stage I low-intermediate risk endometrial carcinoma. METHODS: The control group attended HBFU with regular outpatient visits (i.e., 8) for 3 years after primary treatment. The intervention group underwent PIFU with no prescheduled visits but with instructions about alarm symptoms and options of self-referral. MAIN OUTCOME MEASURES: The endpoints were FCR as measured by the Fear of Cancer Recurrence Inventory (FCRI) and QoL as measured by the European Organisation for Research and Treatment of Cancer Quality of Life Core Questionnaire C-30 (EORTC QLQ C-30), and healthcare use as measured by questionnaires and chart reviews after 34 months of follow-up. RESULTS: FCR decreased from baseline to 34 months in both groups and no difference was found between allocations (difference -6.31 [95% confidence interval -14.24 to 1.63]). QoL remained stable with no difference in any domains between the two arms at 34 months using a linear mixed model analysis. The use of healthcare was significantly lower in the PIFU group (P < 0.01). CONCLUSION: Patient-initiated follow-up is a valid alternative to hospital-based follow-up for people who have been treated for endometrial cancer and have low risk of recurrence.

Healthcare practices that increase the quality of care in cancer trajectories from a general practice perspective: a scoping review.

OBJECTIVE: General practice plays an important role in cancer trajectories, and cancer patients request the continuous involvement of general practice. The objective of this scoping review was to identify healthcare practices that increase the quality of care in cancer trajectories from a general practice perspective. DESIGN, SETTING, AND SUBJECTS: A scoping review of the literature published in Danish or English from 2010 to 2020 was conducted. Data was collected using identified keywords and indexed terms in several databases (PubMed, MEDLINE, EBSCO CINAHL, Scopus, and ProQuest), contacting key experts, searching through reference lists, and reports from selected health political, research- and interest organizations' websites. MAIN OUTCOME MEASURES: We identified healthcare practices in cancer trajectories that increase quality care. Identified healthcare practices were grouped into four contextual domains and allocated to defined phases in the cancer trajectory. The results are presented according to the Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for scoping reviews (PRISMA-ScR). RESULTS: A total of 45 peer-reviewed and six non-peer-reviewed articles and reports were included. Quality of care increases in all phases of the cancer trajectory when GPs listen carefully to the full story and use action plans. After diagnosis, quality of care increases when GPs and practice staff have a proactive care approach, act as interpreters of diagnosis, treatment options, and its consequences, and engage in care coordination with specialists in secondary care involving the patient. CONCLUSION: This scoping review identified healthcare practices that increase the quality of care in cancer trajectories from a general practice perspective. The results support general practice in investigating own healthcare practices and identifying possibilities for quality improvement.KEY POINTSIdentified healthcare practices in general practice that increase the quality of care in cancer trajectories:Listen carefully to the full storyUse action plans and time-out-consultationsPlan and provide proactive careAct as an interpreter of diagnosis, treatment options, and its consequences for the patientCoordinate care with specialists, patients, and caregivers with mutual respectIdentified barriers for quality of care in cancer trajectories are:Time constraints in consultationsLimited accessibility for patients and caregiversHealth practices to increase the quality of care should be effective, safe, people-centered, timely, equitable, integrated, and efficient. These distinctions of quality of care, support general practice in investigating and improving quality of care in cancer trajectories.

Physical activity, return to work self-efficacy, and work status among employees undergoing chemotherapy for cancer - a prospective study with 12 months follow-up.

BACKGROUND: Numerous studies emphasize the positive effects of physical activity on health and well-being in cancer patients. The effects of physical activity on the working lives of cancer patients have received less attention. The aim of the present study was to examine the association between physical activity and work status in employees with cancer, and the mediating role of return to work self-efficacy (RTWSE) in this association. METHODS: Data from questionnaires (physical activity, RTWSE, performance status, sociodemographic), patient records, and Danish national registries (work status, education) were collected for 217 employees initiating chemotherapy for cancer. The associations of physical activity at baseline with work status at baseline and at twelve months follow-up, respectively, were estimated with logistic regression. The mediating role of RTWSE was investigated using the Sobel Goodmann test. RESULTS: Employees with moderate (> 30 min/day) or high (> 150 min/day) levels of current daily activity at baseline had significantly increased odds for working at baseline (OR = 2.83, 95%CI = 0.73-10.96 and OR = 6.13, 95%CI = 1.68-22.40, respectively) and at twelve months (OR = 3.90, 95%CI = 1.19-12.77 and OR = 3.43, 95%CI = 1.12-10.51, respectively), compared to sedentary employees. Likewise, employees, physically active in their leisure time (light or vigorous psychical activity) for 2-4 h/week or > 4 h/week of light activity at baseline, had increased odds for working at twelve months (OR range = 1.20 (95%CI = 0.40-3.61)-5.39(95%CI = 0.78-37.32)), compared to sedentary employees. RTWSE was not found to mediate the observed associations. CONCLUSIONS: Physical activity appears positively associated with work status in employees undergoing treatment for cancer in the twelve months period after initiating chemotherapy.

The PROMova study comparing active and passive use of patient-reported outcome measures in ovarian cancer follow-up: effect on patient-perceived involvement, satisfaction with care, and usefulness.

BACKGROUND: Patients with ovarian cancer often experience substantial health problems and side effects resulting in reduced quality of life (QoL). Different models of using patient-reported outcome measures (PROMs) during follow-up may improve the quality of care. This national, multicenter observational study investigated the effect of active use of PROMs on patient-perceived involvement, satisfaction with care, unmet needs, and QoL during follow-up of ovarian cancer. MATERIAL AND METHODS: Ovarian cancer patients were recruited at the end of primary treatment at eight centers in Denmark. During 18 months of follow-up patients repeatedly completed European Organization for Research and Treatment of Cancer (EORTC) questionnaires covering health related QoL and symptoms. At the sites using PROMs actively (ACT), the clinician had access to an overview of the patient's scores during the clinical encounter. Clinicians using PROMs passively were alerted in case of severe development of symptoms. Following each encounter, patients evaluated their health service experience by completing the CollaboRATE scale of involvement in decision making, the Patient Experience Questionnaire, and ad hoc questions covering patient-perceived usefulness of the PROMs. RESULTS: A total of 223 patients were enrolled, i.e., 168 (75.3%) at five sites using ACT and 53 (23.8%) at three sites using them passively. We found no statistically significant difference in involvement in the decision making, satisfaction with care, unmet needs, and QoL between the two groups. The majority of patients found it useful to complete the PROMs, although it did not seem to significantly support them in raising issues with the oncologist. CONCLUSION: Active use of PROMs did not improve patients' experience of involvement in follow-up care as compared to passive use.

Cross-sectoral video consultations in cancer care: perspectives of cancer patients, oncologists and general practitioners.

PURPOSE: Multidisciplinary video consultations are one method of improving coherence and coordination of care in cancer patients, but knowledge of user perspectives is lacking. Continuity of care is expected to have a significant impact on the quality of cancer care. Enhanced task clarification and shared responsibility between the patient, oncologist and general practitioner through video consultations might provide enhanced continuity in cancer care. METHOD: We used descriptive survey data from patients and doctors in the intervention group based on a randomised controlled trial to evaluate the user perspectives and fidelity of the intervention. RESULTS: Patients expressed that they were able to present their concerns in 95% of the consultations, and believed it was beneficial to have both their doctors present in 84%. The general practitioner and oncologist found that tripartite video consultation would lead to better coordination of care in almost 90% of the consultations. However, the benefits of handling social issues and comorbidity were sparser. Consultations were not accomplished in 11% due to technical problems and sound and video quality were non-satisfactory in 20%. CONCLUSION: Overall, multidisciplinary video consultations between cancer patient, general practitioner and oncologist were feasible in daily clinics. Initial barriers to address were technical issues and seamless planning. Patients reported high satisfaction, patient centredness and clarity of roles. General practitioners and oncologists were overall positive regarding role clarification and continuity, although less pronounced than patients. TRIAL REGISTRATION: www.clincialtrials.gov , NCT02716168.

Association of patient-reported outcomes and ovarian cancer recurrence.

BACKGROUND: The vast majority of patients with advanced ovarian cancer experience disease recurrence after primary treatment. OBJECTIVE: To explore the diagnostic accuracy of repeated measurement of patient-reported outcomes and quality-of-life scores in relation to ovarian cancer recurrence. METHODS: Patients with ovarian cancer were recruited to the PROMova study by the end of their primary treatment at eight centers in Denmark. The purpose of the PROMova study was to explore the applicability of repeated use of patient-reported outcomes, which consisted of the European Organization for Research and Treatment of Cancer generic questionnaire and the ovarian specific questionnaire. The patient-reported outcomes were completed 3, 6, 9, 12, and 15 months after enrollment or until recurrence. The 3-month interval between completions was the period in which recurrence was assessed. Imaging and the biomarker CA125 were used as reference modality for recurrence. Mixed effects logistic regression was used to investigate the association between mean patient-reported outcome scores and recurrence. Receiver operating curves were used to establish cut-off scores. The diagnostic accuracy of patient-reported outcomes, including sensitivity, specificity, and positive and negative predictive values was estimated based on the Youden index. For combined scales, diagnostic accuracy was investigated based on multivariate analysis. RESULTS: The analysis included 196 patients with an overall recurrence rate of 50.5% and an overall mean time to recurrence of 302 days. With imaging as reference, patients with recurrence reported significantly lower global health, worse physical functioning, and more abdominal symptoms preceding recurrence. With CA125 as reference, global health, physical and emotional functioning were impaired. Despite the worsening of a number of symptoms prior to recurrence whichever reference modality was applied, the patient-reported outcome scores did not provide adequate diagnostic accuracy. CONCLUSION: Repeated use of patient-reported outcomes during surveillance of ovarian cancer was not of diagnostic value. Future efforts should be directed at improving the administration of patient-reported outcomes as well as exploring the potential of using these outcomes as an indicator of clinical relevance.

Validation of the Return To Work Self-Efficacy questionnaire in a population of employees undergoing treatment for cancer.

OBJECTIVE: Several Return To Work Self-Efficacy (RTWSE) questionnaires have been developed and found relevant to understanding the return to work (RTW) process of employees with various health problems, including employees with cancer. The aim of the present study was to examine the reliability and validity of the Danish 19-item RTWSE questionnaire (RTWSE-19DK ) in a sample of employees with cancer. METHODS: Employees undergoing treatment for cancer completed the RTWSE-19DK at baseline (n = 68) and at 1 week (n = 49). Additional questionnaires measured work ability, cancer-related self-efficacy and psychological distress. Internal consistency, test-retest reliability and construct validity were examined. RESULTS: The total and the three subscales of the RTWSE-19DK showed good internal consistencies with Cronbach's alphas between 0.90 and 0.97 and high test-retest reliability with Intraclass Correlation Coefficients between 0.84 and 0.90. Examining construct validity, the RTWSE-19DK showed medium and large correlations with cancer-related self-efficacy (r = 0.54), mental work ability (r = 0.51), and general work ability (r = 0.35), small correlations with physical work ability (r = 0.26) and anxiety (r = -0.10), and no correlations with depression (r = -0.08) and test date (r = 0.03). CONCLUSION: The RTWSE-19DK showed good reliability and adequate validity in employees undergoing cancer treatment. In clinical practice, the RTWSE-19 questionnaire may help practitioners identify areas of concern in the RTW process of cancer patients.

Age-stratified validation of the functional assessment of chronic illness therapy-spiritual well-being based on a large cohort of Danish cancer survivors.

OBJECTIVE: Previous research indicates that the FACIT-Sp instrument is susceptible to bias when measuring spiritual well-being in older patients. Our first focus was to evaluate the two-factor vs the three-factor model of the FACIT-Sp and our second focus was to explore how these models behave for different age groups. METHODS: We used a large national cohort of Danish cancer patients (N = 3439) which included a significant number of patients aged at least 70 years (N = 1033). Item-test correlations and factor analyses were conducted on complete cases (N = 2820). Additionally, a reliability analysis was performed using Cronbach's alpha and Guttman's lower-bound estimate. RESULTS: Factor analysis revealed a loading pattern for the oldest age group (70+) showing items on peace and meaning loading into a single factor, as originally proposed in the two-factor model. The loading estimates for the patients younger than 70 matched the three-factor model. Furthermore, item-test correlations changed as age increased. Based on Cronbach's alpha and Guttman's estimate of .83 and .89, respectively, total scores proved reliable. Items 4, 8, and 12 are discussed separately concerning their problematic influence on instrument validity in their current formulation. CONCLUSION: Overall, the three-factor model had a good fit; however, for the eldest patients a two-factor solution proved even better. Interpretation of FACIT-Sp subscale scores of older cancer patients must therefore be done with caution.

Associations between lifestyle, erectile dysfunction and healthcare seeking: a population-based study.

Objective: To investigate associations between age, lifestyle and erectile dysfunction (ED) in the general population and to explore associations between age, lifestyle and contact with a general practitioner (GP) regarding ED.Design: Cross-sectional web-based questionnaire study.Setting: The general Danish population.Subjects: A randomly selected sample of 48,910 men aged 20 years and older.Main outcome measures: Prevalence of ED and probability of contacting a GP regarding ED. In logistic regression models we analysed associations between age, smoking status, alcohol consumption, body mass index (BMI), and self-rated physical fitness on both ED and GP contact.Results: A total of 22,198 men (47.6%) completed the question regarding ED. The overall prevalence of ED was 19.3%, varying from 2.3% among men aged 20-29 years to 55.3% among men aged 80 years and above. 31.8% of men reporting ED had contacted a GP regarding ED. Increasing age, current or former smoking, complete alcohol abstinence or alcohol consumption above seven units per week, high BMI, and poor self-rated physical fitness were significantly associated with reporting ED. The proportion of GP contacts was significantly associated with age. Overall, no significant associations between lifestyle and healthcare seeking were observed, although lower odds of GP contact were found when physical fitness was rated as poor.Conclusion: Reporting ED and GP contact were significantly associated with age. Furthermore, lifestyle was significantly associated with reporting ED, but largely not associated with healthcare seeking. These findings are important for future interventions aiming to improve diagnosis and treatment of ED.Key pointsExperiencing erectile dysfunction is frequent in the general population, especially among older men. • In this large-scale national survey, age and lifestyle were significantly associated with reporting erectile dysfunction. • Healthcare seeking with erectile dysfunction was significantly associated with age, but not with lifestyle. • Diagnosis and treatment of erectile dysfunction might be challenged when erectile dysfunction does not lead to healthcare seeking.

The Predictive Value of Return to Work Self-efficacy for Return to Work Among Employees with Cancer Undergoing Chemotherapy.

Purpose The aim of the present study was to examine the predictive value of Return to Work Self-efficacy (RTWSE) on Return to Work (RTW) among employees undergoing chemotherapy for cancer and to examine the relative contribution of RTWSE as predictor variable compared to personal, health-related, illness- and treatment-related and work-related factors. Methods A sample of 114 sickness absent employees with various cancers (age 18-62) included in the study on average 33 days after initiating chemotherapy were followed for 15 months. Data sources included patient questionnaires (RTWSE, depression, fatigue, performance status), sociodemographic factors (age, sex, job type, and perceived support from the workplace), patient records (type of cancer, treatment intention, number of treatment modalities, time since diagnosis and time since initiation of chemotherapy), and Danish national registries (RTW and education). Associations between RTWSE at baseline and weeks until full RTW during 15-months follow-up were analyzed using Cox proportional hazards regression. Results In the univariate analysis, high RTWSE was associated with shorter time to RTW (Hazard Ratio (HR) 1.84, 95% confidence interval (CI) 1.12-3.03). In the multivariate model, RTWSE failed to reach statistical significance (HR 1.12, 95% CI 0.62-2.02), whereas female sex (HR 0.30, 95% CI 0.15-0.60) and receiving palliative treatment (HR 0.15, 95% CI 0.05-0.44) were significantly associated with later RTW. Conclusion Compared to other factors of significance, RTWSE was not the strongest predictor of RTW when examined among employees undergoing chemotherapy for cancer. Before using the RTWSE questionnaire to identify employees with cancer at risk of late RTW, it is important to recognize that the predictive value of RTWSE may be different for employees on sick leave due to cancer than for other sickness absence populations.

Adherence to a long-term progressive resistance training program, combining supervised and home-based exercise for breast cancer patients during adjuvant treatment.

Background: The purpose of the study was to examine adherence and identify patient- and treatment-related factors associated with adherence to a 20-week combined supervised and home-based progressive resistance training program in women treated for breast cancer. Methodology: The study population consisted of the intervention group in a randomized clinical trial examining the effect of resistance exercise on lymphoedema prevention (n = 82). The full program lasted 50 weeks, with an initial 20 weeks combined supervised and home-based exercise followed by 30 weeks self-administered exercise. Information about attendance rates (supervised exercise) and exercise dairies (home-based exercise) in the first 20 weeks was available for 74 and 62 participants, respectively. Adherence was measured as numbers of exercise sessions performed divided by expected number of exercise sessions with >2/3 categorized as high adherence. Age-adjusted odds ratios (OR) were used to assess the associations between patient- and treatment-related factors with adherence. Results: The number of participants with high adherence to supervised exercise decreased in the late period (from week 11 onward) compared to the early period (65% vs. 48%) whereas the proportion of participants with high adherence to home-based exercise remained close to 55%. The most prominent factor associated with high adherence to supervised exercise was neoadjuvant chemotherapy [OR 7.09; 95% confidence interval (CI), 1.12-44.62]. For home-based exercise, lower adherence was seen in obese participants (OR 0.16; 95% CI, 0.04-0.65) and in participants with average or below average lower body muscle strength at baseline (OR 0.12; 95% CI, 0.03-0.46). Conclusion: The results of this study offer valuable information on factors associated with adherence to a program of supervised and home-based exercise. Interventions may be adapted to ensure higher adherence rates through supportive efforts targeted to women who are obese, have low muscle strength and who receive no or adjuvant chemotherapy (as opposed to neoadjuvant chemotherapy) during exercise.

Improving continuity by bringing the cancer patient, general practitioner and oncologist together in a shared video-based consultation - protocol for a randomised controlled trial.

BACKGROUND: Strengthening the coordination, continuity and intersectoral cooperation for cancer patients' during cancer treatment is being underlined by international guidelines and research. General practitioners have assumed a growing role in the cancer patient disease trajectory because of their roles as coordinators and the consistent health provider. However, general practitioners are challenged in providing support for cancer patients both during treatment and in the survivorship phase. General practitioners reported barriers are lack of timely and relevant communication from the oncologist and limited knowledge to guidelines, as well as lack of trust from patients. Therefore, the current study will examine whether a shared video-based consultation between the cancer patient, general practitioner and oncologist can ease general' challenges and thereby enhance the patient-centeredness for the cancer patients and their perception of intersectoral cooperation and continuity. METHODS: The study is designed as a pragmatic randomised controlled trial for patients starting chemotherapy at the Department of Oncology, Lillebaelt Hospital, Denmark who are listed with a general practitioner in the Region of Southern Denmark. We intend to include 278 adults diagnosed with colorectal, breast, lung, gynecologic or prostate cancer. The intervention group will receive the "Partnership intervention" which consists of one or more video-consultations between the cancer patient, general practitioner and oncologist. The consultations are estimated to last between 10 and 20 min. The specific aims of the consultation are, summary of the patient trajectory, sharing of knowledge regarding comorbidity, psychosocial resources and needs, physical well-being, medicine, anxiety and depression symptoms, spouses, workability and late complication and side-effects to the cancer treatment. DISCUSSION: Video-based consultation that brings the cancer patient, the general practitioner and the oncologist together in the early phase of treatment may facilitate a sense of partnership that is powerful enough to improve the patient's perception of intersectoral cooperation, continuity of cancer care and health-related quality of life. TRIAL REGISTRATION: ClincialTrials.gov Identifier: NCT02716168 . Date of registration: 03.03.2016.

Developing and evaluating a course programme to enhance existential communication with cancer patients in general practice.

OBJECTIVE: Our objective was to describe the development and evaluation of a course programme in existential communication targeting general practitioners (GPs). DESIGN: The UK Medical Research Council's (MRC) framework for complex intervention research was used as a guide for course development and evaluation and was furthermore used to structure this paper. The development phase included: identification of existing evidence, description of the theoretical framework of the course, designing the intervention and deciding for types of evaluation. In the evaluation phase we measured self-efficacy before and after course participation. To explore further processes of change we conducted individual, semi-structured telephone interviews with participants. SUBJECTS AND SETTING: Twenty practising GPs and residentials in training to become GPs from one Danish region (mean age 49). RESULTS: The development phase resulted in a one-day vocational training/continuing medical education (VT/CME) course including the main elements of knowledge building, self-reflection and communication training. Twenty GPs participated in the testing of the course, nineteen GPs answered questionnaires measuring self-efficacy, and fifteen GPs were interviewed. The mean scores of self-efficacy increased significantly. The qualitative results pointed to positive post course changes such as an increase in the participants' existential self-awareness, an increase in awareness of patients in need of existential communication, and an increase in the participants' confidence in the ability to carry out existential communication. CONCLUSIONS: A one-day VT/CME course targeting GPs and including the main elements of knowledge building, self-reflection and communication training showed to make participants more confident about their ability to communicate with patients about existential issues and concerns. Key points Patients with cancer often desire to discuss existential concerns as part of clinical care but general practitioners (GPs) lack confidence when discussing existential issues in daily practice. In order to lessen barriers and enhance existential communication in general practice, we developed a one-day course programme. Attending the course resulted in an increase in the participants' confidence in the ability to carry out existential communication. This study adds knowledge to how confidence in existential communication can be increased among GPs.

Detection of recurrence in early stage endometrial cancer - the role of symptoms and routine follow-up.

BACKGROUND: Considerable controversy remains as to the optimal organization of endometrial cancer follow-up. AIM: To evaluate the relationship between the way recurrence was detected and survival after treatment for endometrial cancer. Further, to identify characteristics associated with a pre-scheduled examination in women with symptomatic recurrence. MATERIAL AND METHODS: All women with early stage endometrial cancer during 2005-2009 were included in a population-based historical cohort derived from the Danish Gynecological Cancer Database. Women diagnosed with recurrence within three years after primary surgery and the mode of recurrence detection were identified from hospital charts: asymptomatic recurrence detected at regular follow-up, symptomatic recurrence detected at regular follow-up or symptomatic recurrence detected in between follow-up. Survival of women with symptomatic and asymptomatic disease was compared. Furthermore, characteristics associated with self-referral as compared to presenting symptoms at regular follow-ups were identified using univariate analyses. RESULTS: In total, 183 cases of recurrence (7%) were identified in the cohort of 2612 women. Of these, 65.5% were symptomatic with vaginal bleeding as the most prevalent symptom. Asymptomatic women had a significantly better three-year survival rate compared to symptomatic women (80.3% vs. 54.3%, p < 0.01). A total of 2.3% of the entire population had an asymptomatic recurrence. Women diagnosed at a pre-scheduled visit due to symptoms had a higher educational level (p = 0.03) and more often high-risk disease (p = 0.02) than symptomatic women diagnosed at regular follow-up. CONCLUSION: Early stage endometrial cancer carries a low risk of recurrence. Survival appears to be superior in asymptomatic patients, but length-time bias, i.e. the effect of aggressive tumor biology in symptomatic recurrences, may bias results in non-randomized controlled trials. Well educated patients with symptoms of recurrence more often sought medical attendance compared to less educated counterparts. This should be considered if patient-initiated follow-up is the standard care.

Outpatient management of intensively treated acute leukemia patients--the patients' perspective.

PURPOSE: In recent years, patients with acute leukemia (AL) have, to a greater extent, been managed in an outpatient setting where they live at home but appear every other day for follow-up visits at hospital. This qualitative article elucidates how patients with AL experience the different conditions of the inpatient and outpatient settings and how they reflect on these transitions in order to create meaning in and keep up everyday life. METHODS: Qualitative semi-structured individual interviews twice with each AL patient focusing on the outpatient setting, impact on everyday life, responsibility and the home were performed. Twenty-two patients were interviewed the first time, and 15 of these were interviewed the second time. The data were analyzed in an everyday life relational perspective. RESULTS: Outpatient management facilitates time to be administrated by the patients and thereby the possibility of maintaining everyday life, which was essential to the patients. The privacy ensured by the home was important to patients, and they accepted the necessary responsibility that came with it. However, time spent together with fellow patients and their relatives was an important and highly valued part of their social life. CONCLUSIONS: Approached from the patient perspective, outpatient management provided a motivation for patients as it ensured their presence at home and provided the possibility of taking part in everyday life of the family, despite severe illness and intensive treatment. This may suggest a potential for extending the outpatient management further and also for patient involvement in own care.

Participation in questionnaire studies among couples affected by breast cancer.

OBJECTIVE: Participation bias may be a problem in couple-based psychosocial studies. Therefore, it is important to investigate the characteristics associated with participation. The aim of this study was to analyze whether participation in a longitudinal psychosocial questionnaire study among couples affected by breast cancer was associated with socioeconomic, breast cancer-specific, and other health-related characteristics of the patients and partners. METHODS: The analyzes are based on 2254 couples who were invited to participate in a nationwide survey on psychosocial adjustment among couples dealing with breast cancer. Participating couples (N = 792) were compared with non-participating couples (N = 1462) with regard to socioeconomic and health-related characteristics obtained from nationwide clinical and administrative registers. RESULTS: Associations were seen between various socioeconomic variables and couple participation. The patient characteristics older age (OR = 0.15 [95% CI = 0.07-0.55]), low education (OR = 1.95 [95% CI = 1.46-2.68]), disability pension (OR = 0.59 [95% CI = 0.39-0.55]), or non-western ethnicity (OR = 0.36 [95% CI = 0.15-0.82]) reduced couple participation. The partner characteristics older age (OR = 0.23 [95% CI = 0.15-0.43]), low education (OR = 1.67 [95% CI = 1.25-2.22]), receiving disability pension (OR = 0.46 [95% CI = 0.25-0.82]), non-western ethnicity (OR = 0.17 [95% CI = 0.06-0.49]), or high morbidity (OR = 0.76 [95% CI = 0.60-0.96]) also reduced couple participation. Furthermore, couples with low income (OR = 1.49 [95% CI = 1.16-1.95]) had reduced participation. No associations were found between couple participation and breast cancer-related variables. CONCLUSIONS: Socioeconomic characteristics of patients and partners, and morbidity of partners may influence participation in couple-based psychosocial breast cancer research. Breast cancer-related characteristics do not seem to influence participation.

Influence of comorbidity on cancer patients' rehabilitation needs, participation in rehabilitation activities and unmet needs: a population-based cohort study.

PURPOSE: This study aims to investigate possible associations between cancer survivors' comorbidity status and 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: We performed a population-based cohort study including incident cancer patients diagnosed from 1 October 2007 to 30 September 2008 in two regions in Denmark. Fourteen months after diagnosis, participants completed a questionnaire measuring different aspects and dimensions of rehabilitation. Individual information on comorbidity was based on hospital contacts from 1994 and until diagnosis, subsequently classified according to the Charlson comorbidity index. Logistic regression analyses were used to explore the association between comorbidity and outcomes for rehabilitation. Analyses were conducted overall and stratified for gender, age and cancer type. RESULTS: A total of 3,439 patients responded (70%). Comorbidity at all levels was statistically significant associated with a physical rehabilitation need, and moderate to severe comorbidity was statistically significant associated with a need in the emotional, family-oriented and financial areas as well as participation in physical-related rehabilitation activities. Stratified analyses showed that significant results in most cases were related to being older than 65 years or having colorectal or prostate cancer. CONCLUSIONS: Comorbidity at all levels was significantly associated with needs for physical rehabilitation. Moderate to severe comorbidity was further associated with other areas of need and participation in physical area activities. This should be taken into account when planning rehabilitation interventions for cancer survivors. Differences among subgroups could help target interventions and should be explored further.

Evaluation of a complex intervention to improve activities of daily living of disabled cancer patients: protocol for a randomised controlled study and feasibility of recruitment and intervention.

BACKGROUND: Many cancer patients have problems performing activities of daily living (ADL). A randomised controlled trial was designed to examine the effects of an ADL intervention in addition to standard treatment and care in a hospital setting. The objective of this article was to present the study and to analyse the feasibility of the recruitment process and the intervention. METHODS: Adult disabled cancer patients at Næstved Hospital in Denmark were enrolled between 1 March 2010 and 30 June 2011 and randomised into an ADL intervention or to a control group. The intervention was performed by occupational therapists. The feasibility of the recruitment was analysed with regard to success in achieving the estimated number of participants and identification of barriers, and feasibility of the intervention was based on calculations of patient attendance and patient acceptability. The primary outcome of the randomised controlled trial was patients' health-related quality of life 2 and 8 weeks after baseline. RESULTS: A total of 118 disabled cancer patients were enrolled in the study over a time span of 16 months. Very few meetings between occupational therapist and patient were cancelled. Time spent on the intervention varied considerably, but for the majority of patients, time consumption was between 1-3 hours. CONCLUSIONS: Despite difficulties with recruitment, participation was considered feasible and the intervention was accepted among patients. Missing data in the follow-up period were mostly due to death among participants. Very few participants declined to complete questionnaires during follow-up.

A randomised controlled trial to improve general practitioners' services in cancer rehabilitation: effects on general practitioners' proactivity and on patients' participation in rehabilitation activities.

UNLABELLED: Few studies have evaluated initiatives targeting implementation of cancer rehabilitation. In this study we aim to test the effects of a complex intervention designed to improve general practitioners' (GPs) involvement in cancer rehabilitation. Outcomes were proactive contacts to patients by their GP reported by the patients and GPs, respectively, and patients' participation in rehabilitation activities. METHODS: Cluster randomised controlled trial. All general practices in Denmark were randomised to an intervention group or to a control group (usual procedures). Patients were subsequently allocated to the intervention or the control group based on randomisation status of their GP. Between May 2008 and February 2009, adult patients treated for incident cancer at Vejle Hospital, Denmark, were assessed for eligibility. A total of 323 general practices were included, allocating 486 patients to an intervention and 469 to a control group. The intervention included a patient interview about rehabilitation with a rehabilitation coordinator at the hospital, comprehensive information to the GP about individual needs for rehabilitation, and an encouragement to the GP to contact the patient proactively. Questionnaires were administered to patients and GPs at 14 months after inclusion. RESULTS: At baseline average age of patients was 63 years and 72% were female. The most frequent cancer localisations were breast (43%), lung (15%), and malignant melanoma (8%). The intervention had no effect on either patient- or GP-reported extent of GP proactivity. Further, no effect was observed on patient participation in rehabilitation activities during the 14-month follow-up period. DISCUSSION: The intervention had no effect on GP proactivity or on patient participation in rehabilitation activities. However, analyses showed a significant association between proactivity and participation and we, therefore, conclude that increased GP proactivity may facilitate patient participation in rehabilitation activities.

Association between unmet needs and quality of life of cancer patients: a population-based study.

BACKGROUND: Two conceptually different morbidity outcomes unmet needs and health-related quality of life are used to identify cancer patients in need of clinical attention and to evaluate rehabilitation programmes. The knowledge on the interrelation between unmet needs and health-related quality of life is scarce. This paper studies the hypothesis that patient-perceived unmet needs of rehabilitation during the cancer trajectory are associated with decreased quality of life. MATERIAL AND METHODS: Based on registers, a Danish population-based cohort of adult, incident, mixed-site cancer patients diagnosed between 1 October 2007 and 30 September 2008 was established. At 14 months following diagnosis participants completed a questionnaire including health-related quality of life (EORTC QLQ C-30), psychological distress (POMS-SF), and unmet needs with regard to physical, emotional, family-oriented, sexual, work-related, and financial problems. Unmet needs were assessed through six ad hoc questions. RESULTS: Questionnaires were received from 3439 of 4947 patients, resulting in a response rate of 70%. The three most frequent cancer types were breast (28.4%), prostate (14.6%) and colorectal cancer (15.2%). Overall, 60.1% expressed an unmet need of rehabilitation in at least one area, physical and emotional problems being the most frequent (40.0% and 37.5%). For all scales of the EORTC QLQ C-30 and POMS, significant adjusted mean differences were observed between patients with unmet needs in at least one area and patients with no unmet needs (p-values < 0.001). These differences were well above levels usually considered clinically relevant. Further, impairment increased with increasing number of areas in which unmet needs were reported. DISCUSSION: We confirmed the hypothesis that patient-perceived unmet needs of rehabilitation during the cancer trajectory are associated with decreased quality of life. This study supports the use of unmet needs questions to identify patients in need of clinical attention. Interventions reducing cancer patients' perceived needs of rehabilitation may enhance quality of life.