ColoREctal Wellbeing Research Articles

Quality of life and health status in older adults (≥65 years) up to five years following colorectal cancer treatment: Findings from the ColoREctal Wellbeing (CREW) cohort study.

Colorectal cancer (CRC) is common in older adults, with more than 70% of diagnoses in people aged ≥65 years. Despite this, there is a knowledge gap regarding longer-term outcomes in this population. Here, we identify those older people most at risk of poor quality of life (QoL) and health status in the five years following CRC treatment. CREW is a UK longitudinal cohort study investigating factors associated with health and wellbeing recovery following curative-intent CRC surgery. Participants completed self-report questionnaires pre-surgery, then at least annually up to five years. Longitudinal analyses explored the prevalence and pre-surgery risk factors of poor QoL (QLACS-GSS) and health status (EQ-5D: presence/absence of problems in five domains) in older (≥65 years) participants over five years. 501 participants aged ≥65years completed questionnaires pre-surgery; 45% completed questionnaires five years later. Oldest-old participants (≥80 years) reported poorer QoL (18% higher QLACS-GSS) and 2-4 times higher odds of having problems with mobility or usual activities, compared with the youngest-old (65-69 years) over follow-up. Baseline higher self-efficacy was significantly associated with better QoL (10-30% lower QLACS-GSS scores compared to those with low self-efficacy) and lower odds of problems in all EQ-5D domains. Adequate social support was significantly associated with better QoL (8% lower QLACS-GSS) and lower odds of problems with usual activities (OR = 0.62) and anxiety/depression (OR = 0.56). There are important differences in QoL and health status outcomes for the oldest-old during CRC recovery. CREW reveals pre-surgery risk factors that are amenable to intervention including self-efficacy and social support.

Prevalence and determinants of depression up to 5years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study.

AimDepression experienced by people with colorectal cancer (CRC) is an important clinical problem affecting quality of life. Recognition of depression at key points in the pathway enables timely referral to support. This study aimed to examine depression before and 5 years after surgery to examine its prevalence and identify determinants.MethodThe ColoREctal Wellbeing (CREW) study is a prospective UK cohort study involving 872 adults with nonmetastatic CRC recruited before surgery with curative intent. Questionnaires completed before surgery and 3, 9, 15, 24, 36, 48 and 60 months after surgery captured socio‐demographics and assessed depression (Centre for Epidemiologic Studies Depression Scale, CES‐D) and other psychosocial factors. Clinical details were also gathered. We present the prevalence of clinically significant depression (CES‐D ≥ 20) over time and its predictors assessed before and 2 years after surgery.ResultsBefore surgery, 21.0% of the cohort reported CES‐D ≥ 20 reducing to 14.7% 5 years after surgery. Presurgery risk factors predicting subsequent depression were clinically significant depression and anxiety, previous mental health service use, low self‐efficacy, poor health, having neoadjuvant treatment and low social support. Postsurgery risk factors at 2 years predicting subsequent depression were clinically significant depression, negative affect, cognitive dysfunction, accommodation type and poor health.ConclusionDepression is highly pervasive in people with CRC, exceeding prevalence in the general population across follow‐up. Our findings emphasize the need to screen and treat depression across the pathway. Our novel data highlight key risk factors of later depression at important and opportune time points: before surgery and at the end of routine surveillance. Early recognition and timely referral to appropriate support is vital to improve long‐term psychological outcomes.

Nutritional care in colorectal cancer-what is the state of play?

Nutrition is associated with aetiology and impacts outcomes in colorectal cancer (CRC). This study aimed to explore nutritional symptoms and concerns of patients with CRC and CRC dietetic resource across the UK. Study 1 is a descriptive analysis of nutrition-related measures in the ColoRectal Wellbeing (CREW) study, a prospective 5-year longitudinal cohort study of a representative sample of 872 adults with non-metastatic CRC. Study 2 is a descriptive analysis of data collected using a freedom of information request to all UK trusts/boards on dietetic resources for CRC. Study 1 found that 31% of CREW participants wanted more diet and lifestyle advice. At 3months post-surgery, 10% reported poor appetite. A fifth experienced weight loss and 16% had concerns regarding weight loss 9months post-surgery. In study 2 just 3% of hospitals providing CRC services had a dedicated CRC dietitian (hepato-pancreato-biliary, 11.1%; head and neck cancer, 14.3%). There was no dietetic outpatient follow-up of CRC patients in 72% of hospitals. Dietetic resource for patients with CRC is scarce even though weight loss, poor appetite and unmet needs are common and persist over time. Work is needed to embed nutritional care into the management of patients with CRC.

Prevalence and predictors of poor sexual well-being over 5 years following treatment for colorectal cancer: results from the ColoREctal Wellbeing (CREW) prospective longitudinal study

ObjectivesTo describe prevalence and predictors of poor sexual well-being for men and women over 5 years following treatment for colorectal cancer.DesignProspective longitudinal study, from presurgery to 5 years postsurgery, with...

Does quality of life return to pre-treatment levels five years after curative intent surgery for colorectal cancer? Evidence from the ColoREctal Wellbeing (CREW) study.

The ColoREctal Wellbeing (CREW) study is the first study to prospectively recruit colorectal cancer (CRC) patients, carry out the baseline assessment pre-treatment and follow patients up over five years to delineate the impact of treatment on health and wellbeing. CRC patients received questionnaires at baseline (pre-surgery), 3, 9, 15, 24, 36, 48 and 60 months. The primary outcome was Quality of Life in Adult Cancer Survivors (QLACS); self-efficacy, mental health, social support, affect, socio-demographics, clinical and treatment characteristics were also assessed. Representativeness was evaluated. Predictors at baseline and at 24 months of subsequent worsened quality of life (QOL) were identified using multivariable regression models. A representative cohort of 1017 non-metastatic CRC patients were recruited from 29 UK cancer centres. Around one third did not return to pre-surgery levels of QOL five years after treatment. Baseline factors associated with worsened QOL included >2 comorbidities, neoadjuvant treatment, high negative affect and low levels of self-efficacy, social support and positive affect. Predictors at 24 months included older age, low positive affect, high negative affect, fatigue and poor cognitive functioning. Some risk factors for poor outcome up to five years following CRC surgery, such as self-efficacy, social support and comorbidity management, are amenable to change. Assessment of these factors from diagnosis to identify those most likely to need support in their recovery is warranted. Early intervention has the potential to improve outcomes.

A five year longitudinal study of people living with and beyond colorectal cancer: key findings from the ColoREctal Well-being (CREW) study

A five year longitudinal study of people living with and beyond colorectal cancer: key findings from the ColoREctal Well-being (CREW) study

Supportive care needs of patients following treatment for colorectal cancer: risk factors for unmet needs and the association between unmet needs and health-related quality of life\u2014results from the ColoREctal Wellbeing (CREW) study

PurposeTo investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL).MethodsAs part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery.ResultsThe SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment.ConclusionsUnmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care.Implications for Cancer SurvivorsEarly identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.

Comorbidities are associated with poorer quality of life and functioning and worse symptoms in the 5years following colorectal cancer surgery: Results from the ColoREctal Well-being (CREW) cohort study.

ObjectiveMore people are living with the consequences of cancer and comorbidity. We describe frequencies of comorbidities in a colorectal cancer cohort and associations with health and well‐being outcomes up to 5 years following surgery.MethodsProspective cohort study of 872 colorectal cancer patients recruited 2010 to 2012 from 29 UK centres, awaiting curative intent surgery. Questionnaires administered at baseline (pre‐surgery), 3, 9, 15, 24 months, and annually up to 5 years. Comorbidities (and whether they limit activities) were self‐reported by participants from 3 months. The EORTC QLQ‐C30 and QLQ‐CR29 assessed global health/quality of life (QoL), symptoms, and functioning. Longitudinal analyses investigated associations between comorbidities and health and well‐being outcomes.ResultsAt baseline, the mean age of participants was 68 years, with 60% male and 65% colon cancer. Thirty‐two per cent had 1 and 40% had ≥2 comorbidities. The most common comorbidities were high blood pressure (43%), arthritis/rheumatism (32%), and anxiety/depression (18%). Of those with comorbidities, 37% reported at least 1 that limited their daily activities. Reporting any limiting comorbidities was associated with poorer global health/QoL, worse symptoms, and poorer functioning on all domains over 5‐year follow‐up. Controlling for the most common individual comorbidities, depression/anxiety had the greatest deleterious effect on outcomes.ConclusionsClinical assessment should prioritise patient‐reported comorbidities and whether these comorbidities limit daily activities, as important determinants of recovery of QoL, symptoms, and functioning following colorectal cancer. Targeted interventions and support services, including multiprofessional management and tailored assessment and follow‐up, may aid recovery of health and well‐being in these individuals.

Self-efficacy for managing illness-related problems; results from the ColoREctal Wellbeing (CREW) study

Background: With increasing emphasis on self-management of cancer aftercare, identifying factors associated with a person’s ability to self-manage after cancer is important to enhance understanding of how and when to best support patients. Data from the ColoREctal Wellbeing (CREW) study were examined to identify patterns of self-efficacy for managing illness-related problems in the first two years following colorectal cancer surgery.

Self-efficacy for managing illness-related problems; results from the ColoREctal Wellbeing (CREW) study

Background: With increasing emphasis on self-management of cancer aftercare, identifying factors associated with a person's ability to self-manage after cancer is important to enhance understanding of how and when to best support patients. Data from the ColoREctal Wellbeing (CREW) study were examined to identify patterns of self-efficacy for managing illness-related problems in the first two years following colorectal cancer surgery.

Social support following diagnosis and treatment for colorectal cancer and associations with health-related quality of life: Results from the UK ColoREctal Wellbeing (CREW) cohort study.

ObjectiveSocial support is acknowledged as important in cancer survivorship, but little is known about change in support after cancer diagnosis and factors associated with this, particularly in colorectal cancer. The CREW cohort study investigated social support up to 2 years following curative intent surgery for colorectal cancer.MethodsA total of 871 adults recruited pre‐treatment from 29 UK centres 2010 to 2012 consented to follow‐up. Questionnaires at baseline, 3, 9, 15, and 24 months post‐surgery included assessments of social support (Medical Outcomes Study‐Social Support Survey, MOS‐SSS) and health‐related quality of life (HRQoL). Socio‐demographic, clinical and treatment details were collected. Longitudinal analyses assessed social support over follow‐up, associations with participant characteristics, and HRQoL.ResultsAround 20% were living alone and 30% without a partner. Perceived social support declined in around 29% of participants, with 8% of these reporting very low levels overall from baseline to 2 years (mean MOS‐SSS overall score < 40 on a scale from 0 to 100). Older age, female gender, greater neighbourhood deprivation, presence of co‐morbidities, and rectal cancer site were significantly associated with reductions in perceived support. Poorer HRQoL outcomes (generic health/QoL, reduced wellbeing, anxiety, and depression) were significantly associated with lower levels of social support.ConclusionsLevels of social support decline following colorectal cancer diagnosis and treatment in nearly a third of patients and are an important risk factor for recovery of HRQoL. Assessment of support early on and throughout follow‐up would enable targeted interventions to improve recovery, particularly in the more vulnerable patient groups at risk of poorer social support.

Colorectal cancer patient\u2019s self-efficacy for managing illness-related problems in the first 2\xa0years after diagnosis, results from the ColoREctal Well-being (CREW) study

PurposeThere is a growing emphasis on self-management of cancer aftercare. Little is known about patient’s self-efficacy (confidence) to manage illness-related problems and how this changes over time. This paper describes the patterns of self-efficacy for managing illness-related problems amongst colorectal cancer patients in the 2 years following diagnosis.MethodsIn this prospective cohort study, questionnaires were administered at baseline (pre-surgery), 3, 9, 15 and 24 months to 872 colorectal cancer patients. Self-efficacy (confidence to manage illness-related problems), anxiety, social support, affect, socio-demographics, physical symptoms and clinical and treatment characteristics were assessed. Group-based trajectory analysis identified trajectories of self-efficacy up to 24 months and predictors.ResultsFour trajectories of self-efficacy were identified: group 1 (very confident) 16.0% (95% confidence interval (CI) 10.7–21.3%), group 2 (confident) 45.6% (95% CI 40.3–51.0%), group 3 (moderately confident) 29.5% (95% CI 25.1–33.8%) and group 4 (low confidence) 8.9% (95% CI 6.4–11.4%). Greater deprivation, domestic status, more co-morbidities, worse fatigue and pain, lower positivity and greater negativity were significantly associated with lower self-efficacy. There was an increase in mean scores for self-efficacy over time for the whole sample, but this did not reach the cut-off for minimally important differences. At 2 years, the lowest level of confidence to manage was for symptoms or health problems.ConclusionAround 40% of patients had suboptimal levels of confidence to manage illness-related problems with little change from the time of diagnosis across the four groups.Implications for cancer survivorsScreening for self-efficacy at diagnosis would enable targeted, early intervention which could in turn enhance health-related quality of life.

The impact of co-morbidities on recovery from colorectal cancer within first 2 years after surgery: Results from the UK Colorectal Wellbeing (CREW) cohort study

The impact of co-morbidities on recovery from colorectal cancer within first 2 years after surgery: Results from the UK Colorectal Wellbeing (CREW) cohort study

Lessons learnt recruiting to a multi-site UK cohort study to explore recovery of health and well-being after colorectal cancer (CREW study)

BackgroundThe UK leads the world in recruitment of patients to cancer clinical trials, with a six-fold increase in recruitment during 2001–2010. However, there are large variations across cancer centres. This paper details recruitment to a large multi-centre prospective cohort study and discusses lessons learnt to enhance recruitment.MethodsDuring CREW (ColoREctal Wellbeing) cohort study set up and recruitment, data were systematically collected on all centres that applied to participate, time from study approval to first participant recruited and the percentage of eligible patients recruited into the study.Results30 participating NHS cancer centres were selected through an open competition via the cancer networks. Time from study approval to first participant recruited took a median 124 days (min 53, max 290). Of 1350 eligible people in the study time frame, 78% (n = 1056) were recruited into the study, varying from 30-100% eligible across centres. Recruitment of 1056 participants took 17 months.ConclusionIn partnership with the National Cancer Research Network, this successful study prioritised relationship building and education. Key points for effective recruitment: pre-screening and selection of centres; nurses as PIs; attendance at study days; frequent communication and a reduced level of consent to enhance uptake amongst underrepresented groups.

Using the Clinical Research Network for psychosocial cancer research: lessons learned from two observational studies

BackgroundPatient recruitment to psychosocial oncology research has increased but the many studies have been single-site or small-scale. The National Institute for Health Research Clinical Research Network, supports National Institute for...