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Objectives: Standardised reporting of patient and public involvement (PPI) in research studies is needed to facilitate learning about how to achieve effective PPI. The aim of this evaluation was to explore the impact of PPI in a large UK study, the Life After Prostate Cancer Diagnosis (LAPCD) study, and to explore the facilitators and challenges experienced. Design: Mixed methods study using an online survey and semi-structured interviews. Survey and topic guide were informed by systematic review evidence of the impact of PPI and by realist evaluation. Descriptive analysis of survey data and thematic analysis of interview data were conducted. Results are reported using the GRIPP2 reporting guidelines. Setting: Life After Prostate Cancer Diagnosis (LAPCD) study, a UK-wide patient-reported outcomes study Participants: User Advisory Group (UAG) members (n=9) and researchers (n=29) from the LAPCD study Results: Impact was greatest on improving survey design and topic guides for interviews, enhancing clarity of patient facing materials, informing best practice around data collection, and ensuring steering group meetings were grounded in what is important to the patient. Further impacts included ensuring patient focussed dissemination of study findings at conference presentations and in lay summaries. Facilitating context factors included clear aims, time to contribute, confidence to contribute, and feeling valued and supported by researchers and other UAG members. Facilitating mechanisms included embedding the UAG within the study as a separate work-stream, allocating time and resources to the UAG reflecting the value of input, and putting in place clear communication channels. Hindering factors included time commitment, geographical distance, and lack of standardised feedback mechanisms. Conclusion: Including PPI as an integral component of the LAPCD study and providing the right context and mechanisms for involving the UAG helped maximise the programme’s effectiveness

Purpose. There are known associations between treatment of prostate cancer (PCa) involving Androgen Deprivation Therapy (ADT) and psychological and physical side effects. We investigate the associations between cancer-related symptoms, health-related quality of life (HRQL), and poor psychological outcomes in men whose treatment for PCa involved ADT. Methods. A cross-sectional postal questionnaire was administered to UK men 18–42 months post diagnosis of PCa. Men completed items on functional outcomes using the Expanded Prostate Cancer Index Composite (EPIC-26), EuroQol-5D (EQ-5D), and the European Organisation for Research and Treatment of Cancer (EORTC) Fatigue subscale. Psychological outcomes (mental well-being and psychological distress) were assessed using the Short Warwick–Edinburgh Mental Well-being Scale (SWEMWBS) and the Kessler 6-item scale (K6), respectively. Associations between explanatory variables and psychological outcomes were assessed using stepped logistic regression. Results. 13,097 men treated with ADT completed a questionnaire. A minority of men reported poor mental well-being (15.5%) or severe psychological distress (6.6%). After controlling for sociodemographic and clinical variables, reporting clinically significant fatigue was strongly associated with severe psychological distress (OR 9.92; 95% CI 7.63 to 12.89) and poor well-being (OR 3.86; 95% CI 3.38 to 4.42). All cancer-related symptoms and HRQL variables were associated with both psychological outcomes. Conclusions. ile the majority of men treated with ADT did not report poor psychological outcomes, a small proportion reported severe problems. Clinically significant fatigue was demonstrated as a possible indicator of poor outcomes. Healthcare systems need to have clear protocols in place which specifically and routinely target psychological distress and fatigue.

Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects. Methods: Men were recruited through the UK-wide ‘Life After Prostate Cancer Diagnosis’ (LAPCD) survey. Telephone interviews were conducted with men (n=14) with BA and BC backgrounds between 18-42 months post-diagnosis. Data were analysed using a Framework approach. Results: Most men (n=12) were born outside the UK, were married (n=9) and employed (n=9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a ‘positive’ front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority, and; support-seeking from close community. A few men emphasised a need to ‘pitch’ awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising. Conclusion: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and mens’ reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.

Background. Little is known about the health-related quality of life (HRQL) of men living with advanced prostate cancer. We report population-wide functional outcomes and HRQL in men with all stages of prostate cancer, and identify implications for healthcare delivery. Methods. Men alive 18-42 months after diagnosis of prostate cancer were identified through cancer registration data. A postal survey was administered which contained validated measures to assess a) functional outcomes (EPIC-26 plus use of interventions for sexual dysfunction) and b) generic HRQL (EQ-5D-5L & self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQL across diagnostic stage and self-reported treatment groups. Findings. 35,823 (60.8%) men responded. Stage was known for 85.8%; 19,599 (63.8%) stage I/II, 7,209 (23.4%) stage III, 3,925 (12.8%) stage IV. Functional outcomes: Poor sexual function was common (81.0%), regardless of stage, and over half of men (55.8%) received no intervention for this. Differences in urinary and bowel morbidity were greater with respect to treatment than stage. In men treated with androgen deprivation therapy (ADT), 30.7% reported moderate/big problems with hot flushes, 29.4% with lack of energy and 22.5% with weight gain. HRQL: Overall self-assessed health was similar in men with stage I-III disease, and whilst reduced in those with stage IV cancer, 23.5% with metastatic disease reported no problems on any EQ-5D dimension. Interpretation. Men diagnosed with advanced disease do not report markedly different HRQL outcomes to those diagnosed with localised disease, although substantial problems with hormonal function and fatigue are reported amongst men treated with ADT. Sexual dysfunction is common and the majority of men are not offered helpful intervention or support. Service improvements around sexual rehabilitation and measures to reduce the impact of ADT are required.

Purpose: Prostate cancer incidence, treatment and survival rates vary throughout the United Kingdom (UK) but little is known about regional differences in quality of survival. Objective: To investigate variations in patient-reported outcomes between UK countries and English Cancer Alliances. Design, setting and participants: A cross-sectional postal survey of prostate cancer survivors diagnosed 18-42 months previously. Outcome measurements and statistical analysis: Urinary, bowel, sexual problems and vitality were patient reported using the EPIC-26 questionnaire. General health was also self-assessed. Regional variations were identified using multivariable log-linear regression. Results and limitations: 35,823 men responded; 60.8% of those invited. Self-assessed health was significantly lower than the UK average in Wales and Scotland. Respondents reported more urinary incontinence in Scotland, more urinary irritation/obstruction in Scotland and Northern Ireland (NI), poorer bowel function in Scotland and NI, worse sexual function in Scotland, and reduced vitality/hormonal function in Scotland, Wales and NI. Self-assessed health was poorer than the English average in South Yorkshire and North-East & Cumbria, with more urinary incontinence in North-East & Cumbria and Peninsula, greater sexual problems in West Midlands and poorer vitality in North-East & Cumbria and West Midlands. Limitations include difficulty identifying clinically significant differences and limited information on pre-treatment conditions. Conclusions: Despite adjustment for treatment, clinical and socio-demographic factors, quality of survival among prostate cancer survivors varied by area of residence. Adoption of best practice from areas performing well could support enhanced survival quality in poorer performing areas, particularly with regards bowel problems and vitality, where clinically relevant differences were reported. Patient summary: We conducted a UK-wide survey of patient’s quality of

Objectives. To explore the experience of treatment decision-making (TDM) amongst men diagnosed with stage 1-3 prostate cancer. Methods. Mixed-methods study incorporating UK wide cross-sectional postal survey of men 18-42 months post-diagnosis and semi-structured interviews with a subsample (n=97), including men who received both radical treatments and active surveillance. Interview data was analysed using a Framework approach. Findings. Within the context of TDM, ‘drivers’ included men’s preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; ‘facilitators’ were mechanisms such as shared decision-making utilised by clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than they desired, with no clinical recommendations; others reported receiving conflicting clinical recommendations. Information on potential side effects was often reported as inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side effects sometimes led to decision regret. Conclusions. TDM should involve men exercising preferences and priorities in discussion with clinicians. Men are not empowered when required to take more TDM responsibility than desired or when their potentially inappropriate preferences are unchallenged. Clinicians should ensure patients do not receive conflicting recommendations.

Objectives: To provide data on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI), to act as a baseline for studies of prostate cancer outcomes and to aid service provision within the general population. Subjects and Methods: A cross-sectional postal survey of 10 000 men aged ≥40 years in NI was conducted and age-matched to the distribution of men living with prostate cancer. The EuroQoL five Dimensions five Levels (EQ-5D-5L) and 26-item Expanded Prostate Cancer Composite (EPIC-26) instruments were used to enable comparisons with prostate cancer outcome studies. Whilst representative of the prostate cancer survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding those aged 40–59 years and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-squared tests, analysis of variance, and multivariable log-linear regression. Results: Amongst men aged ≥60 years, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction, and 6.5% bowel dysfunction. In all, 38.1% reported at least one problem and 2.1% all three. Worse outcome was associated with increasing number of long-term conditions, low physical activity, and higher body mass index (BMI). Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; whilst urinary incontinence, bowel, and sexual dysfunction were more common among the unemployed. Conclusion: These data provide an insight into sensitive issues seldom reported by elderly men, which result in poor general health, but could be addressed given adequate service provision. The relationship between these problems, raised BMI and low physical activity offers the prospect of additional health gain by addressing public health issues such as obesity. The results provide essential c

Effective stakeholder integration for guideline development should improve outcomes and adherence to clinical practice guidelines.

Background Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. Methods To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1–5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy—Bladder). Results In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51–97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59–74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34–37%) and radiotherapy (44–50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. Conclusion The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.

Purpose: To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). Patients and Methods: All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, 2 tests, and logistic regression models were conducted. Results: Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. Conclusion: Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Purpose: This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. Patients and Methods: All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). Results: The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). Conclusion: This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

Background: Quality of cancer care may greatly impact upon patients’ health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients’ experiences of care and develop an explanatory model illustrating impact upon HRQoL. Methods: Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients’ specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. Results: The survey response rate was 63.3% (21,802/34,467), of which 25.8% (n=5634) participants provided free-text comments. Of retrieved comments on experiences of care (n=1688), over half (n=1045, 62%) described positive care experiences. Most negative experiences concerned a lack of post-treatment care (n=191, 11% of retrieved comments), and insufficient information concerning self-management strategies (n=135, 8%) or treatment side effects (n=160, 9%). Associations existed between HRQoL scores and coded algorithm-retrieved comments. Analysis indicated that the mechanism by which service quality impacted upon HRQoL was the extent to which services prevented or alleviated challenges associated with disease and treatment burdens. Conclusions: Learning-based text mining techniques were found useful and practical tools to identify specific free-text comments within a large dataset, facilitating resource-efficient qualitative analysis. This method should be considered for future PROM analysis to inform policy and p

Background Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. Methods To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1–5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy—Bladder). Results In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51–97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59–74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34–37%) and radiotherapy (44–50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. Conclusion The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.

Purpose: To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). Patients and Methods: All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, 2 tests, and logistic regression models were conducted. Results: Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. Conclusion: Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Background: Quality of cancer care may greatly impact upon patients’ health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients’ experiences of care and develop an explanatory model illustrating impact upon HRQoL. Methods: Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients’ specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. Results: The survey response rate was 63.3% (21,802/34,467), of which 25.8% (n=5634) participants provided free-text comments. Of retrieved comments on experiences of care (n=1688), over half (n=1045, 62%) described positive care experiences. Most negative experiences concerned a lack of post-treatment care (n=191, 11% of retrieved comments), and insufficient information concerning self-management strategies (n=135, 8%) or treatment side effects (n=160, 9%). Associations existed between HRQoL scores and coded algorithm-retrieved comments. Analysis indicated that the mechanism by which service quality impacted upon HRQoL was the extent to which services prevented or alleviated challenges associated with disease and treatment burdens. Conclusions: Learning-based text mining techniques were found useful and practical tools to identify specific free-text comments within a large dataset, facilitating resource-efficient qualitative analysis. This method should be considered for future PROM analysis to inform policy and p

Purpose: This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. Patients and Methods: All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). Results: The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). Conclusion: This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

Background Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. Methods To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1–5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy—Bladder). Results In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51–97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59–74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34–37%) and radiotherapy (44–50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. Conclusion The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.

Purpose: To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). Patients and Methods: All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, 2 tests, and logistic regression models were conducted. Results: Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. Conclusion: Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Purpose: This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. Patients and Methods: All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). Results: The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). Conclusion: This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

Background: Quality of cancer care may greatly impact upon patients’ health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients’ experiences of care and develop an explanatory model illustrating impact upon HRQoL. Methods: Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients’ specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. Results: The survey response rate was 63.3% (21,802/34,467), of which 25.8% (n=5634) participants provided free-text comments. Of retrieved comments on experiences of care (n=1688), over half (n=1045, 62%) described positive care experiences. Most negative experiences concerned a lack of post-treatment care (n=191, 11% of retrieved comments), and insufficient information concerning self-management strategies (n=135, 8%) or treatment side effects (n=160, 9%). Associations existed between HRQoL scores and coded algorithm-retrieved comments. Analysis indicated that the mechanism by which service quality impacted upon HRQoL was the extent to which services prevented or alleviated challenges associated with disease and treatment burdens. Conclusions: Learning-based text mining techniques were found useful and practical tools to identify specific free-text comments within a large dataset, facilitating resource-efficient qualitative analysis. This method should be considered for future PROM analysis to inform policy and p

Background Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. Methods To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1–5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy—Bladder). Results In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51–97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59–74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34–37%) and radiotherapy (44–50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. Conclusion The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.