Modifiable pre-treatment factors are associated with quality of life in women with gynaecological cancers at diagnosis and one year later: Results from the HORIZONS UK national cohort study.

OBJECTIVE: Personalised care requires the identification of modifiable risk factors so that interventions can be implemented rapidly following a gynaecological cancer diagnosis. Our objective was to determine what pre-treatment factors are associated with quality of life (QOL) at baseline (pre-treatment) and 12 months. METHODS: 1222 women with a confirmed diagnosis of endometrial, ovarian, cervical or vulvar cancer from 82 UK NHS hospitals agreed to complete questionnaires at baseline, three and 12 months. Questionnaires included measures of QOL, health, lifestyle, support and self-management. The primary outcome measure was QOL as measured by Quality of Life in Adult Cancer Survivors (QLACS). Sites provided clinical data at baseline, six and 12 months. Linear regression models were constructed to examine the association between baseline characteristics and QOL outcomes. RESULTS: QOL declined between baseline and 3 months, followed by an improvement at 12 months. Baseline (pre-treatment) factors associated with worse QOL at both baseline and 12 months were depression, anxiety, living in a more deprived area and comorbidities which limit daily activities, whereas higher self-efficacy and age of 50+ years were associated with better QOL. CONCLUSIONS: Depression, anxiety and self-efficacy are modifiable risk factors that can impact on QOL. Screening for these, and assessment of whether comorbidities limit daily activities, should be incorporated in a holistic needs assessment and interventions to improve self-efficacy should be made available. Care can then be personalised from the outset to enable all women with a gynaecological cancer the opportunity to have the best QOL.

Association between Quality of Interactions Schedule ratings and care experiences of people with a dementia in general hospital settings: a validation study.

INTRODUCTION: Establishing methods to evaluate interactions between hospital staff and patients with a dementia is vital to inform care delivery. This study aimed to assess the validity of Quality of Interactions Schedule (QuIS) ratings in relation to the care experiences of people with a dementia in a general hospital setting. METHODS: Four hundred and ninety face-to-face interactions between staff and patients with a dementia (n = 107) on six medicine for older people wards in a UK National Health Service hospital were observed and rated using QuIS and the Psychological Well-Being in Cognitively Impaired Persons (PWB-CIP) tool. We also invited patient ratings for longer interactions (n = 217). Analyses explored associations between QuIS ratings, PWB-CIP ratings and patient ratings. RESULTS: When QuIS was rated negative, the mean researcher-rated patient psychological well-being was lower (PWB = 7.9 out of maximum score of 10) than when QuIS was non-negative (PWB = 8.8, p = 0.036). Negative QuIS ratings were associated with negative ratings on seven out of ten individual PWB-CIP items. When QuIS was rated negative, the associated patient rating was 4% less likely to be 'happy'. The patient was also 4% more likely to rate the interaction as 'kind'. Patients struggled to participate in care ratings. CONCLUSIONS: Some patients found responding to researcher questions difficult or not relevant, reflecting the need for development of more suitable methods in this field. Our findings of an association between lower quality QuIS-rated interactions and lower psychological well-being lend support to the use of QuIS with patient populations that include people with a dementia.

Follow-up care after treatment for prostate cancer: evaluation of a supported self-management and remote surveillance programme.

BACKGROUND: Alternative models of cancer follow-up care are needed to ameliorate pressure on services and better meet survivors' long-term needs. This paper reports an evaluation of a service improvement initiative for the follow-up care of prostate cancer patients based on remote monitoring and supported self-management. METHODS: This multi-centred, historically controlled study compared patient reported outcomes of men experiencing the new Programme with men experiencing a traditional clinic appointment model of follow-up care, who were recruited in the period immediately prior to the introduction of the Programme. Data were collected by self-completed questionnaires, with follow up measurement at four and eight months post-baseline. The primary outcome was men's unmet survivorship needs, measured by the Cancer Survivors' Unmet Needs Survey. Secondary outcomes included cancer specific quality of life, psychological wellbeing and satisfaction with care. The analysis was intention to treat. Regression analyses were conducted for outcomes at each time point separately, controlling for pre-defined clinical and demographic variables. All outcome analyses are presented in the paper. Costs were compared between the two groups. RESULTS: Six hundred and twenty-seven men (61%) were consented to take part in the study (293 in the Programme and 334 in the comparator group.) Regarding the primary measure of unmet survivorship needs, 25 of 26 comparisons favoured the Programme, of which 4 were statistically significant. For the secondary measures of activation for self-management, quality of life, psychological well-being and lifestyle, 20 of 32 comparisons favoured the Programme and 3 were statistically significant. There were 22 items on the satisfaction with care questionnaire and 13 were statistically significant. Per participant costs (British pounds, 2015) in the 8 month follow up period were slightly lower in the programme than in the comparator group (£289 versus £327). The Programme was acceptable to patients. CONCLUSION: The Programme is shown to be broadly comparable to traditional follow-up care in all respects, adding to evidence of the viability of such models.

Follow-up care after treatment for prostate cancer: protocol for an evaluation of a nurse-led supported self-management and remote surveillance programme.

BACKGROUND: As more men survive a diagnosis of prostate cancer, alternative models of follow-up care that address men's enduring unmet needs and are economical to deliver are needed. This paper describes the protocol for an ongoing evaluation of a nurse-led supported self-management and remote surveillance programme implemented within the secondary care setting. METHODS/DESIGN: The evaluation is taking place within a real clinical setting, comparing the outcomes of men enrolled in the Programme with the outcomes of a pre-service change cohort of men, using a repeated measures design. Men are followed up at four and 8 months post recruitment on a number of outcomes, including quality of life, unmet need, psychological wellbeing and activation for self-management. An embedded health economic analysis and qualitative evaluation of implementation processes are being undertaken. DISCUSSION: The evaluation will provide important information regarding the effectiveness, cost effectiveness and implementation of an integrated supported self-management follow-up care pathway within secondary care.

The role of social networks in the self-management support for young women recently diagnosed with breast cancer.

It is widely acknowledged that social network support plays an important role in the quality of life and illness management of breast cancer survivors. However, the factors and processes that enable and sustain such support are less well understood. This paper reports baseline findings from a prospective UK national cohort of 1,202 women with breast cancer (aged <50 years at diagnosis), recruited before starting treatment, conducted in 2016-2019. Descriptive, univariate and multivariate regression analyses explored associations between the individual, and network member characteristics, and the type of support provided. Social network members provided a substantial level of illness-related, practical and emotional support. Highest contribution was provided by friends, followed by close family members. The social network members of women who did not have a partner provided a higher level of support than those in networks with a partner. Women without higher education were more reliant on close family members than those with higher education, and this was more so for women without a partner. Women with higher education without a partner were more reliant on friends and were overall best supported. Women without higher education who did not have a partner were overall least well supported. They had much smaller networks, were highly reliant on close family members, and on high level contributions from all network members. There is a need to develop network-based interventions to support people with a cancer diagnosis, prioritising support for the groups identified as most at risk. Interventions that support engagement with existing network members during treatment, and those that help extend such networks after treatment, are likely to be of benefit. A network perspective can help to develop tailored support and interventions by recognising the interactions between network and individual level processes.

Use of the Quality of Interactions Schedule (QuIS) in assessing negative staff-patient interactions in acute care settings for older people: A content validation study.

INTRODUCTION: The Quality of Interactions Schedule (QuIS) is an observational tool to assess the quality of staff-patient interactions in a healthcare context. QuIS is a promising measure for the evaluation of compassionate care, particularly where care is being delivered to patient populations, such as older people, who may be excluded from self-completion data collection methods. This study investigates the content validity of QuIS in identification of negative staff-patient interactions in acute care. METHODS: Staff-patient interactions (n = 1598) on adult inpatient units with a high proportion of older patients in two UK National Health Service hospitals were observed and rated using QuIS. When rating interactions as negative quality, observers recorded brief field notes to explain the rating. Content analysis was used to develop categories of negative interaction type. These categories were compared with the QuIS negative interaction definitions. RESULTS: Eighty-eight negative ratings were accompanied by a field note that could be used in the analysis. Five interaction categories were identified: Patient calls for help, call not acknowledged; Staff focused on task and appear to ignore/not hear patient; Patient-led interactions appear dismissed or ignored; Patient prevented from doing something without explanation; Staff interact with each other or talk to relatives, not including patient. There was clear association between the derived categories and QuIS guidance for negative ratings. CONCLUSION: These findings support the validity of QuIS data in relation to measurement of interaction quality in acute care settings. Extending the research to a wider range of settings would be useful.

Acceptability and usability of a patient portal for men with prostate cancer in follow-up care.

Background: A stratified approach to cancer follow-up care, including remote monitoring and supported self-management for suitable patients, is increasingly recommended. Patient portals can facilitate such an approach, allowing access to results and information. There is limited understanding of the use of portals within this context. Aim: This paper reports the acceptability and usability of a patient portal developed to facilitate a remote monitoring and supported self-management follow-up care programme for men with prostate cancer. Methods: A mixed methods evaluation, including analysis of service utilisation data, a survey of users' experiences and satisfaction, and telephone interviews of non-users' views and experiences. Results: Sixty percent of eligible patients registered to use the portal. Of these, 37% logged in at least once over a 6-month period and 52% over 12 months. Satisfaction among these users was reasonably high. Use of the portal in general was rated as very easy or easy by over 70% of respondents, and the majority felt the portal had helped them manage their condition in various ways. However, a large minority (40%) did not use the portal, with reasons for non-use including lack of access to computing facilities and lack of computer skills. Those who were older were less likely to register to use the portal. Conclusions: A large proportion of participants found the patient portal acceptable and easy to use. Reasons for non-use should be addressed in order to maximise system efficiencies and minimise inequalities in care, and the needs of specific groups should be taken into account.

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.

OBJECTIVES: To describe prevalence and predictors of poor sexual well-being for men and women over 5 years following treatment for colorectal cancer. DESIGN: Prospective longitudinal study, from presurgery to 5 years postsurgery, with eight assessment points. Logistic regression models predicted sexual well-being from presurgery to 24 months and 24 months to 60 months; time-adjusted then fully adjusted models were constructed at each stage. SETTING: Twenty-nine hospitals in the UK. PARTICIPANTS: Patients with Dukes' stage A-C, treated with curative intent, aged ≥18 years and able to complete questionnaires were eligible. OUTCOME MEASURES: The dependent variable was the Quality of Life in Adult Cancer Survivors sexual function score. Independent variables included sociodemographic, clinical and psychosocial characteristics. RESULTS: Seven hundred and ninety participants provided a sexual well-being score for at least one time point. Thirty-seven per cent of men and 14% of women reported poor sexual well-being at 5 years. Baseline predictors for men at 24 months included having a stoma (OR 1.5, 95% CI 1.02 to 2.20) and high levels of depression (OR 2.69/2.01, 95% CI 1.68 to 4.32/1.12 to 3.61); men with high self-efficacy (OR confident 0.33/0.48, 95% CI 0.18 to 0.61/0.24 to 1.00; very confident 0.25/0.42, 95% CI 0.13 to 0.49/0.19 to 0.94) and social support (OR 0.52/0.56, 95% CI 0.33 to 0.81/0.35 to 0.91) were less likely to report poor sexual well-being. Predictors at 60 months included having a stoma (OR 2.30/2.67, 95% CI 1.22 to 4.34/1.11 to 6.40) and high levels of depression (OR 5.61/2.58, 95% CI 2.58 to 12.21/0.81 to 8.25); men with high self-efficacy (very confident 0.14, 95% CI 0.047 to 0.44), full social support (OR 0.26; 95% CI 0.13 to 0.53) and higher quality of life (OR 0.97, 95% CI 0.95 to 0.98) were less likely to report poor sexual well-being. It was not possible to construct models for women due to low numbers reporting poor sexual well-being. CONCLUSIONS: Several psychosocial variables were identified as predictors of poor sexual well-being among men. Interventions targeting low self-efficacy may be helpful. More research is needed to understand women's sexual well-being.

Living into old age with the consequences of breast cancer.

PURPOSE OF THE RESEARCH: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences. METHODS AND SAMPLE: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70-90, and were analysed using thematic analysis. KEY RESULTS: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals. CONCLUSIONS: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.