Professor Emma Ream

OBJECTIVES: Understanding barriers to early diagnosis of symptomatic breast cancer among Black African, Black Caribbean and White British women in the UK. DESIGN: In-depth qualitative interviews using grounded theory methods to identify themes. Findings validated through focus groups. PARTICIPANTS: 94 women aged 33-91?years; 20 Black African, 20 Black Caribbean and 20 White British women diagnosed with symptomatic breast cancer were interviewed. Fourteen Black African and 20 Black Caribbean women with (n=19) and without (n=15) breast cancer participated in six focus groups. SETTING: Eight cancer centres/hospital trusts in London (n=5), Somerset (n=1), West Midlands (n=1) and Greater Manchester (n=1) during 2012-2013. RESULTS: There are important differences and similarities in barriers to early diagnosis of breast cancer between Black African, Black Caribbean and White British women in the UK. Differences were influenced by country of birth, time spent in UK and age. First generation Black African women experienced most barriers and longest delays. Second generation Black Caribbean and White British women were similar and experienced fewest barriers. Absence of pain was a barrier for Black African and Black Caribbean women. Older White British women (e70?years) and first generation Black African and Black Caribbean women shared conservative attitudes and taboos about breast awareness. All women viewed themselves at low risk of the disease, and voiced uncertainty over breast awareness and appraising non-lump symptoms. Focus group findings validated and expanded themes identified in interviews. CONCLUSIONS: Findings challenged reporting of Black women homogenously in breast cancer research. This can mask distinctions within and between ethnic groups. Current media and health promotion messages need reframing to promote early presentation with breast symptoms. Working with communities and developing culturally appropriate materials may lessen taboos and stigma, raise awareness, increase discussion of breast cancer and promote prompt help-seeking for breast symptoms among women with low cancer awareness.

The aim of this review was to systematically identify, appraise and synthesise qualitative research evidence on the experience of adult cancer patients living with chemotherapy-induced peripheral neuropathy (CIPN). A systematic search of the literature was performed in September 2015. Qualitative studies were included if they investigated CIPN and patient experience. Quality of the articles was appraised using an adapted version of the Critical Appraisal Skill Programme Checklist for Qualitative Research (CASP 2014). Themes were identified using the thematic synthesis approach proposed by Thomas and Harden [BMC Medical Research Methodology 8 (2008) 45]. Five articles presented findings generated by 88 patients who had all received neurotoxic chemotherapy. Sample sizes from included studies varied from 1 to 28 patients; all studies originated from America and were published between 2005 and 2015. Four analytical themes emerged: (1) CIPN is an unclear experience, (2) a less important risk, (3) impact on quality of life and (4) a feature of cancer survivorship. In conducting this synthesis, the lack of qualitative evidence in this specific condition is evident. Further studies are needed outside of America, to focus on CIPN risk communication approaches by healthcare professionals, patient understanding and perception of CIPN risk and interventions to promote early detection of CIPN including effective reporting and assessment.

© 2015, Springer-Verlag Berlin Heidelberg.Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy. Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups. Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ?Take Care? intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups? emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention. Conclusions: The ?Take Care? intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention?s effectiveness and cost-effectiveness.

© 2015 Springer-Verlag Berlin Heidelberg Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy. Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups. Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ?Take Care? intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups? emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention. Conclusions: The ?Take Care? intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention?s effectiveness and cost-effectiveness.

Changes in health-care provision have led to cancer patients being offered oral chemotherapy in the community. Three levels of oral chemotherapy services have been proposed (levels 1, 2 and 3) with community pharmacies playing differing roles within them. This study aims to explore health-care professionals' views on oral chemotherapy services being delivered by community pharmacies and to gain insights into the barriers, facilitators and training/knowledge needs of community pharmacists with respect to providing them.Qualitative semi-structured interviews were conducted with a purposive sample of three chemotherapy nurses, five oncology pharmacists and five community pharmacists. Data were analysed thematically using Framework Analysis.Findings for level 1 and 2 services included uncertainty on community pharmacists' professional responsibilities, the expertise of GPs in prescribing oral chemotherapy and the training and competency of community pharmacists. The lack of patient information, care and support provision was emphasised for all the models. Although level 1 was achievable in current practice, level 2 was considered the safest option, while level 3 was ideal but risky option. For all levels, training and education for community pharmacists and inter-professional issues were facilitators to oral chemotherapy services. The service environment, dispensing process-related constraints (access to blood test results and protocols) were significant barriers for levels 2 and 3. Advanced communication skills, patient education and counselling were identified as key areas for education and training for community pharmacists.The study suggests there are significant concerns and challenges associated with community pharmacies implementing any of the proposed levels of oral chemotherapy services. Educational and training opportunities for community pharmacists and the careful development of safe infrastructures will be essential in the future planning and implementation of any community pharmacy oral chemotherapy service.

Objective: To explore barriers to early presentation
and diagnosis with breast cancer among black women.
Design: Systematic review.
Methods: We searched multiple bibliographic
databases (January 1991?February 2013) for primary
research, published in English, conducted in
developed countries and investigating barriers to
early presentation and diagnosis with symptomatic
breast cancer among black women (e18 years).
Studies were excluded if they did not report separate
findings by ethnic group or gender, only reported
differences in time to presentation/diagnosis, or
reported on interventions and barriers to cancer
screening. We followed Cochrane and PRISMA
guidance to identify relevant research. Findings were
integrated through thematic synthesis. Designs of
quantitative studies made meta-analysis impossible.
Results: We identified 18 studies (6183
participants). Delay was multifactorial, individual and
complex. Factors contributing to delay included: poor
symptom and risk factor knowledge; fear of detecting
breast abnormality; fear of cancer treatments; fear of
partner abandonment; embarrassment disclosing
symptoms to healthcare professionals; taboo and
stigmatism. Presentation appears quicker following
disclosure. Influence of fatalism and religiosity on
delay is unclear from evidence in these studies. We
compared older studies (e10 years) with newer ones
( studies, delaying factors included: inaccessibility of
healthcare services; competing priorities and
concerns about partner abandonment. Partner
abandonment was studied in older studies but not in
newer ones. Comparisons of healthy women and
cancer populations revealed differences between how
people perceive they would behave, and actually
behave, on finding breast abnormality.
Conclusions: Strategies to improve early
presentation and diagnosis with breast cancer among
black women need to address symptom recognition
and interpretation of risk, as well as fears of the
consequences of cancer. The review is limited by the
paucity of studies conducted outside the USA and
limited detail reported by published studies
preventing comparison between ethnic groups.

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: 'meeting diverse need', 'differing models of delivery' and 'dilemma and emotion'. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation. © 2011 Blackwell Publishing Ltd.

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.Background: The use of technology-enhanced patient-reported outcome measures to monitor the symptoms experienced by people with cancer is an effective way to offer timely care. Objective: This study aimed to (a) explore the feasibility and acceptability of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy and clinicians involved in their care and (b) assess changes in patient outcomes during implementation of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice. Methods: A repeated-measures, single-arm, mixed-methods study design was used involving poststudy interviews and completion of patient-reported outcome measures at baseline and end of treatment with 16 patients with lung cancer and 13 clinicians who used this mobile phone-based symptom monitoring system. Results: Only rarely did patients report problems in using the handset and they felt that the system covered all relevant symptoms and helped them to manage their symptoms and effectively communicate with clinicians. Clinical improvements in patient anxiety, drowsiness, and self-care self-efficacy were also observed. Clinicians perceived the use of "real-time" risk algorithms and automated self-care advice provided to patients as positively contributing to clinical care. Reducing the complexity of the system was seen as important to promote its utility. Conclusions: Although preliminary, these results suggest that monitoring patient symptoms using mobile technology in the context of radiotherapy for lung cancer is feasible and acceptable in clinical practice. Implications for practice: Future research would be most beneficial if the use of this technology was focused on the postradiotherapy phase and expanded the scope of the system to encompass a wider range of supportive care needs.

Background: As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. New models of survivorship care need to ensure they support selfmanagement and are culturally appropriate across diverse populations. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care.

Methods: A phenomenological qualitative research design was employed. In-depth interviews were conducted with women from diverse socio-demographic backgrounds in England, who completed treatment for breast cancer in the 12 months prior to the study. Data were analysed using Framework Analysis.

Results: Sixty-six women participated and reported expectations and needs were unmet at follow-up. Whilst there were more commonalities in experiences, discernible differences, particularly by ethnicity and age, were identified relating to three key themes: emotional responses on transition to follow-up; challenges communicating with healthcare professionals at follow-up; and challenges finding and accessing information and support services to address unmet needs.

Conclusions: There are cultural differences in the way healthcare professionals and women communicate, not necessarily differences in their post-treatment needs. We do not know if new models of care meet survivors? needs, or if they are appropriate for everyone. Further testing and potential cultural and linguistic adaptation of models of care is necessary to ensure their appropriateness and acceptability to survivors from different backgrounds. New ways of providing survivorship care mean survivors will need to be better prepared for the post-treatment period and the role they will have to play in managing their symptoms and care.

This paper reviews the literature concerning the role of information in facilitating patients' adaptation to chemotherapy and radiotherapy. The relationship between information and patient self-efficacy is examined, and the information requirements of cancer patients receiving treatment are reviewed. Finally, studies evaluating informational interventions for patients receiving either chemotherapy or radiotherapy are critiqued before recommendations for practice are formulated. © 1996 Blackwell Science Ltd.

This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.

Purpose

Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial.

Methods

A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (e18 years; d5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis.

Results

One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [?0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested.

Conclusion

Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion.

Cancer-related fatigue is a symptom with great implications for the quality of life of those that experience it. It is regarded as one of the most distressing symptoms that people with cancer develop. Its aetiology is complex, and although the mechanisms underlying fatigue have not been fully clarified it is evident that it is exacerbated by treatments intended to cure or palliate the disease. Patients at risk of cancer-related fatigue need access to information that will enable them to manage it effectively. There are a growing number of materials available to patients in different European countries on this topic, but it is unclear how useful patients find these. This study was undertaken to explore this through conducting focus groups with patients in the United Kingdom and Switzerland. One focus group was conducted in each country. Findings from these determined that individuals voiced common concerns: fatigue had not been addressed in the clinical setting - individuals surmised why this occurred; participants had not accessed materials on cancer-related fatigue previously; they made recommendations for future resources for patients. However, what was evident was that unless patients can access materials on this topic, their quality becomes purely an academic issue. © 2003 Elsevier Science Ltd. All rights reserved.

Introduction While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The eSMART study (electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised, controlled trial (RCT) of oncology patients. Methods and analysis A total of 1,108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal, or haematological cancer will be recruited from multiple sites across 5 European countries. Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient reported outcome measures (ePROMS) at enrolment, after each of their CTX cycles (up to a maximum of 6 cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include: symptom burden (primary outcome), quality of life (QoL), supportive care needs, anxiety, self-care self-efficacy, work limitations, and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). Ethics and dissemination eSMART received approval from the relevant ethics committees at all of the clinical sites across the 5 participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites.

Purpose: Obtain consensus on research priorities for cancer nursing research in the UK. Design: A 3-round online Delphi survey Setting: Oncology nurses were invited via the UK Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organisations. Sample: 50 oncology nurses and 18 patients Methods: Eligible and consenting individuals reported five priorities for cancer nursing research (round 1), rated their level of agreement with them (round 2), and re-stated/revised their responses in light of the group?s (round 3). Consensus was defined as 80% agreement. Findings: Consensus was reached on 50/107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening and early diagnosis and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and sideeffects. There was some evident divergence: only patients reached consensus regarding palliative care research and only nurses on eHealth and technology research. Conclusions: Oncology nurses and patients do not necessarily prioritise the same research areas. Prevention, screening and early diagnosis are considered of highest priority for future research across both oncology nurses and patients. Implications for nursing: Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for cancer nursing that is relevant and beneficial to both cancer nurses and patients.

Background: Evidence suggests patients delay reporting symptoms of neutropenic sepsis (NS) despite the risk to their life. This study aimed to elicit factors that contribute to delayed patient reporting of NS symptoms.Methods: A constructivist grounded theory study used observations of chemotherapy consultations (13 hours) and 31 in-depth interviews to explore beliefs, experiences and behaviors related to NS. Participants included women with breast cancer, their carers (partners, family or friends) and clinicians. An explanation for patient delays was developed through theoretical sampling of participants to explore emerging areas of interest and through constant comparison of data and their coding. This entailed iterative and concurrent data collection and analysis. Data were collected until saturation.Results: All patients who developed NS type symptoms delayed presenting to hospital (2.5 hours - 8 days), sometimes repeatedly. Moderators of delay included metastatic disease, bereavement, fatalism, religious beliefs and quality of relationships with clinicians. There was an interplay of behaviours between clinicians, patients and carers where they subconsciously conspired to underplay the seriousness and possibility of NS occurring. Conclusions: Findings have implications for health risk communication and development of holistic service models.

Context

Risk profiling of oncology patients based on their symptom experience assists clinicians to provide more personalized symptom management interventions. Recent findings suggest that oncology patients with distinct symptom profiles can be identified using a variety of analytic methods.

Objectives

To evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis.

Methods

Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale (MSAS), that 1329 patients completed prior to their next dose of chemotherapy (CTX), Cohen?s kappa coefficient was used to evaluate for concordance between the two analytic methods. For both LCA and K-modes, differences among the subgroups in demographic, clinical, and symptom characteristics, as well as quality of life outcomes were determined using parametric and nonparametric statistics.

Results

Using both analytic methods, four subgroups of patients with distinct symptom profiles were identified (i.e., All Low, Moderate Physical and Lower Psychological, Moderate Physical and Higher Psychological, All High). The percent agreement between the two methods was 75.32% which suggests a moderate level of agreement. In both analyses, patients in the All High group were significantly younger and had a higher comorbidity profile, worse MSAS subscale scores, and poorer QOL outcomes.

Conclusion

Both analytic methods can be used to identify subgroups of oncology patients with distinct symptom profiles. Additional research is needed to determine which analytic methods and which dimension of the symptom experience provides the most sensitive and specific risk profiles.

Context:

Risk profiling of oncology patients based on their symptom experience assists
clinicians to provide more personalized symptom management interventions. Recent findings
suggest that oncology patients with distinct symptom profiles can be identified using a variety of
analytic methods.

Objectives:

To evaluate the concordance between the number and types of subgroups of
patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis.

Methods:

Using data on the occurrence of 25 symptoms from the Memorial Symptom
Assessment Scale (MSAS), that 1329 patients completed prior to their next dose of
chemotherapy (CTX), Cohen?s kappa coefficient was used to evaluate for concordance between
the two analytic methods. For both LCA and K-modes, differences among the subgroups in
demographic, clinical, and symptom characteristics, as well as quality of life outcomes were
determined using parametric and nonparametric statistics.

Results:

Using both analytic methods, four subgroups of patients with distinct symptom profiles
were identified (i.e., All Low, Moderate Physical and Lower Psychological, Moderate Physical
and Higher Psychological, All High). The percent agreement between the two methods was
75.32% which suggests a moderate level of agreement. In both analyses, patients in the All
High group were significantly younger and had a higher comorbidity profile, worse MSAS
subscale scores, and poorer QOL outcomes.

Conclusion:

Both analytic methods can be used to identify subgroups of oncology patients with
distinct symptom profiles. Additional research is needed to determine which analytic methods
and which dimension of the symptom experience provides the most sensitive and specific risk
profiles.

Background

Lymphedema is a common consequence of breast cancer treatment requiring life-long treatment to reduce
symptoms and prevent complications. Evidence to inform the optimal decongestive lymphedema treatment
package is lacking.

Objective

To identify the effect of decongestive lymphedema treatment on excess arm volume or patient-centered
outcomes for women presenting within either 12 months or mean 9 months of developing arm lymphedema
following breast cancer treatment.

Inclusion criteria

Types of participants: women who received lymphedema treatment within either 12 months or mean 9
months of developing unilateral breast cancer-related arm lymphedema.
Types of intervention: any decongestive lymphedema treatment delivered with the purpose of reducing arm
lymphedema, compared to another form of lymphedema treatment (whether self or practitioner
administered), placebo or no treatment.
Types of outcomes: clinical outcome was excess arm volume; patient-centered outcomes were health
related quality of life, arm heaviness, arm function, patient-perceived benefit and satisfaction with treatment.
Types of studies: experimental study designs were eligible, including randomized and non-randomized
controlled trials, quasi-experimental, prospective and retrospective before and after studies.

Search strategy

A three-step search strategy was utilized to find published and unpublished studies. The search identified
studies published from inception of each database to 6th July 2016. Reference lists were scanned to identify
further eligible studies.

Methodological quality

Studies were critically appraised using appropriate standardized critical appraisal instruments from The
Joanna Briggs Institute.

Data extraction

Details describing each study and treatment results regarding outcomes of interest were extracted from
papers included in the review using appropriate standardized data extraction tools from The Joanna Briggs
Institute.

Data synthesis

Due to heterogeneity in included studies, results for similar outcome measures were not pooled in statistical
meta-analysis. A narrative and tabular format was used to synthesize results from identified and included
studies.

Results

Seven studies reporting results for outcomes of interest were critically appraised and included in the review:
five randomized controlled trials and two descriptive (uncontrolled) studies. Reported outcomes included
excess arm volume (five studies), health-related quality of life (three studies), arm heaviness (one study),
arm function (two studies) and patient-perceived benefit (two studies). There was some evidence that
decongestive treatments were effective for women presenting within either 12 months or mean 9 months
of developing breast cancer-related arm lymphedema, but the wide range of data prevented comparison of
treatment findings which limited our ability to answer the review questions.

Conclusions

Weak evidence (grade B) for the impact of decongestive lymphedema treatment on women with early
lymphedema (i.e. less than 12 months duration of BCRL symptoms) did not allow any conclusions to be
drawn about the most effective treatment to be offered when these women first present for treatment.
Findings provided no justification to support change to current practice.
Future primary research needs to focus on the most effective treatment for women when they first present
with lymphedema symptoms, e.g. treatment provided within 12 months of developing symptoms. Studies
should be adequately powered and recruit women exclusively with less than 12 months duration of BCRL
symptoms, provide longer follow-up to monitor treatment effect over time, with comparable treatment
protocols, outcome measures and reporting methods.

Objectives: Walking is an adaptable, inexpensive and accessible form of physical activity. However its impact on quality of life and symptom severity in people with advanced cancer is unknown. This study aimed to assess the feasibility and acceptability of a randomised controlled trial (RCT) of a community-based walking intervention to enhance quality of life (QoL) in people with recurrent/metastatic cancer.

Design: We used a mixed-methods design comprising a two-centre RCT and nested qualitative interviews. Participants: Patients with advanced breast, prostate, gynaecological or haematological cancers randomised 1:1 between intervention and usual care.

Intervention: The intervention comprised Macmillan?s ?Move More? information, a short motivational interview with a recommendation to walk for at least 30 minutes on alternate days and attend a volunteer-led group walk weekly.

Outcomes: we assessed feasibility and acceptability of the intervention and RCT by evaluating study processes (rates of recruitment, consent, retention, adherence and adverse events), and using end of study questionnaires and qualitative interviews. Patient reported outcome measures (PROMS) assessing quality of life (QoL), activity, fatigue, mood and self-efficacy were completed at baseline and 6, 12 and 24 weeks.

Results: We recruited 42 (38%) of eligible participants. Recruitment was lower than anticipated (goal n=60), the most commonly reported reason being unable to commit to walking groups (n=19). Randomisation procedures worked well with groups evenly matched for age, sex and activity. By week 24, there was a 45% attrition rate. Most PROMs whilst acceptable were not sensitive to change and did not capture key benefits.

Conclusions: The intervention was acceptable, well tolerated and the study design was judged acceptable and feasible. Results are encouraging and demonstrate that exercise was popular and conveyed benefit to participants. Consequently, an effectiveness RCT is warranted, with some modifications to the intervention to include greater tailoring and more appropriate PROMs selected.

Purpose

The purpose of the eSMART (Electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) study is to evaluate the use of mobile phone technology to manage chemotherapy-related toxicities (CRTs) in people with breast cancer (BC), colorectal cancer (CRC), Hodgkin's lymphoma (HL), and non-Hodgkin lymphoma (NHL)) across multiple European sites. One key objective was to review the published and grey literature on assessment and management of CRTs among patients receiving primary chemotherapy for BC, CRC, HL, and NHL to ensure that ASyMS remained evidence-based and reflected current and local practice.

Methods

Three electronic databases were searched for English papers, with abstracts available from 01/01/2004-05/04/2014. For the grey literature, relevant clinical practice guidelines (CPGs)/evidence-based resources (EBRs) from the main international cancer organisations were reviewed as were symptom management (SM) protocols from the sites.

Results

After full-text screening, 27 publications were included. The majority (n = 14) addressed fatigue and focused on BC patients. Relevant CPGs/EBRs were found for fatigue (n = 4), nausea/vomiting (n = 5), mucositis (n = 4), peripheral neuropathy (n = 3), diarrhoea (n = 2), constipation (n = 2), febrile neutropenia/infection (n = 7), palmar plantar erythrodysesthesia (PPE) (n = 1), and pain (n = 4). SM protocols were provided by >40% of the clinical sites.

Conclusions

A need exists for empirical research on SM for PPE, diarrhoea, and constipation. Research is needed on the efficacy of self-care strategies in patients with BC, CRC, HL, and NHL. In general, consistency exists across CPGs/EBRs and local guidelines on the assessment and management of common CRTs.

Some oncology outpatients experience a higher number of and more severe symptoms during chemotherapy (CTX). However, little is known about whether this high risk phenotype persists over time. Latent transition analysis (LTA) was used to examine the probability that patients remained in the same symptom class when assessed prior to the administration of and following their next dose of CTX. For the patients whose class membership remained consistent, differences in demographic and clinical characteristics, and quality of life (QOL) were evaluated. The Memorial Symptom Assessment Scale (MSAS) was used to evaluate symptom burden. LTA was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of the MSAS symptoms. Of the 906 patients evaluated, 83.9% were classified in the same symptom occurrence class at both assessments. Of these 760 patients, 25.0% were classified as Low-Low, 44.1% as Moderate-Moderate and 30.9% as High-High. Compared to the Low-Low class, the other two classes were younger, more likely to be women and to report child care responsibilities, and had a lower functional status and a higher comorbidity scores. The two higher classes reported lower QOL scores. The use of LTA could assist clinicians to identify higher risk patients and initiate more aggressive interventions.

Purpose: To identify potential candidate predictors of anxiety in women with early stage breast cancer (BC) after adjuvant treatments and evaluate methodological development of existing multivariable models to inform the future development of a predictive risk stratification model (PRSM).

Methods: Databases (MEDLINE, Web of Science, CINAHL, CENTRAL and PsycINFO) were searched from inception to November 2015. Eligible studies were prospective, recruited women with stage 0-3 BC, used a validated anxiety outcome e 3 months' post-treatment completion and used multivariable prediction models. Internationally accepted quality standards were used to assess predictive risk of bias and strength of evidence.

Results: Seven studies were identified, five were observational cohorts and two secondary analyses of RCTs. Variability of measurement and selective reporting precluded meta-analysis. Twenty-one candidate predictors were identified in total. Younger age and previous mental health problems were identified as risk factors in e 3 studies. Clinical variables (e.g. treatment, tumour grade) were not identified as predictors in any studies. No studies adhered to all quality standards.

Conclusions: Pre-existing vulnerability to mental health problems and younger age increased the risk of anxiety after completion of treatment for BC survivors, but there was no evidence that chemotherapy was a predictor. Multiple predictors were identified but many lacked reproducibility or were not measured across studies, and inadequate reporting did not allow full evaluation of the multivariable models. The use of quality standards in the development of PRSM within supportive cancer care would improve model quality and performance thereby allowing professionals to better target support for patients.

Background: There are over 25 million people worldwide living with or beyond cancer and this number is
increasing. Cancer survivors face a range of problems following primary treatment. One of the most frequently
reported and distressing symptoms experienced by cancer survivors is fatigue. There is growing support for
survivors who are experiencing problems after cancer treatment to engage in supported self-management. To date
there is some evidence of effective interventions to manage fatigue in this population; however, to our knowledge
there are no online resources that draw on this information to support self-management of fatigue. This paper
describes the protocol for an exploratory randomized controlled trial of an online intervention to support
self-management of cancer-related fatigue after primary cancer treatment.
Methods/design: This is a parallel-group two-armed (1:1) exploratory randomized controlled trial including 125
cancer survivors experiencing fatigue (scoring e4 on a unidimensional 11-point numeric rating scale for fatigue
intensity) within five years of primary treatment completion with curative intent. Participants will be recruited from
13 NHS Trusts across the UK and randomized to either the online intervention (RESTORE), or a leaflet comparator
(Macmillan Cancer Backup, Coping with Fatigue). The primary outcome is a change in Perceived Self-Efficacy for
Fatigue Self-Management (as measured by the Perceived Self-Efficacy for Fatigue Self-Management Instrument).
Secondary outcomes include impact on perception and experience of fatigue (measured by the Brief Fatigue
Inventory), and quality of life (measured by the Functional Assessment of Cancer Therapy - General and the
Personal Wellbeing Index). Outcome measures will be collected at baseline, 6 weeks (completion of intervention),
and 3 months. Process evaluation (including telephone interviews with recruiting staff and participants) will
determine acceptability of the intervention and trial processes.
Discussion: Data from this trial will be used to refine the intervention and contribute to the design of an
effectiveness trial. This intervention will be expanded to address other cancer-related problems important to cancer
survivors following primary cancer treatment.

Background

Prostate cancer (PC) is common and affects Black African and Caribbean men disproportionately more than White men. It is known that PC awareness is low in these groups, but knowledge is lacking about other factors that may deter Black men from seeking information about, or getting tested for, PC. The aim of this review was to appraise research on knowledge and perceptions of PC among Black men.

Methods

Four medical and social science databases were systematically searched, and reference lists of relevant papers were hand searched. Non-English publications were excluded. Qualitative findings were synthesised using comparative thematic analysis to which quantitative findings were integrated.

Results

Thirteen qualitative studies and 20 cross-sectional surveys were included. All except two were conducted in the USA. The analysis identified individual, cultural and social factors likely to impact on Black men's awareness of, and willingness to be tested for, PC. Black men's awareness of personal risk of PC varied greatly between studies. Misunderstandings regarding methods of diagnosis and treatment were widespread. PC testing and treatment were perceived as a threat to men's sense of masculinity. Mistrust of the health-care system, limited access to health care and lack of trusting relationships with health professionals were also prominent.

Conclusion

The factors impacting on Black men's awareness of PC may contribute to late PC diagnosis and should be taken into account when communicating with Black men seeking prostate care. Further, the review demonstrated a need for high-quality studies in countries other than the USA to determine the relevance of the review findings for Black men in other nations and continents.

Purpose

To estimate prevalence and severity of patients' self-perceived supportive care needs in the immediate post-treatment phase and identify predictors of unmet need.

Patients and Methods

A multicenter, prospective, longitudinal survey was conducted. Sixty-six centers recruited patients for 12 weeks. Patients receiving treatment for the following cancers were recruited: breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin's lymphoma. Measures of supportive care needs, anxiety and depression, fear of recurrence, and positive and negative affect were completed at the end of treatment (T0) and 6 months later (T1).

Results

Of 1,850 patients given questionnaire packs, 1,425 (79%) returned questionnaires at T0, and 1,152 (62%) returned questionnaires at T1. Mean age was 61 years; and most respondents were female (69%) and had breast cancer (57%). Most patients had no or few moderate or severe unmet supportive care needs. However, 30% reported more than five unmet needs at baseline, and for 60% of these patients, the situation did not improve. At both assessments, the most frequently endorsed unmet needs were psychological needs and fear of recurrence. Logistic regression revealed several statistically significant predictors of unmet need, including receipt of hormone treatment, negative affect, and experiencing an unrelated significant event between assessments.

Conclusion

Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources.

Increasing numbers of people in the UK are living with recurrent or metastatic cancer, many
of whom experience reduced quality of life resulting from the physical and psychosocial
consequences of cancer and its treatment. While drug treatments are important at alleviating
some symptoms, there is increasing evidence of the benefits of exercise in enhancing
quality of life and health outcomes. Walking is an inexpensive and accessible form of
exercise. To our knowledge, no studies have investigated whether a walking intervention is
sufficient to enhance quality of life and alleviate symptoms in people with recurrent or
metastatic cancer across a range of tumor types. This paper describes the CanWalk study
protocol, which aims to assess the feasibility and acceptability of undertaking a randomized
controlled trial of a community-based walking program to enhance quality of life and well &

Informal carers provide important emotional support to patients having chemotherapy and assistance in monitoring and managing side?effects. If they are inadequately supported in this, patient and carer morbidity may result. This study explored needs of informal carers supporting patients with cancer having chemotherapy. The study used a mixed methods approach. Carers of colorectal or lymphoma cancer patients at one comprehensive cancer centre participated. Questionnaire data informed semi?structured interviews conducted with a subsample of respondents. Interviews were analysed using Framework analysis. Questionnaire data were analysed descriptively. Fifty?nine informal carers were invited to participate; 48 returned the questionnaire (response rate 81%) and 13 were interviewed. Informal carers' needs for information about chemotherapy and its side?effects were largely met although a third felt completely or somewhat unprepared to deal with particular symptoms experienced by patients at home. Many carers had unmet needs regarding financial support and their own needs as carers. Assertiveness was important to many caring roles, but it appeared difficult for informal carers to adopt when they were unsupported in this and their role was unrecognised by health professionals. Future research should develop interventions to systematically prepare carers for their carer role, improve carer involvement and ultimately improve patient outcomes.

Pioneering advances have been made in Internet of Things technologies (IoT) in healthcare. This article describes the development and testing of a bespoke IoT system for dementia care. TIHM for dementia is part of the NHS England National Test Bed Programme and has been trailing the deployment of network enabled devices combined with artificial intelligence to improve outcomes for people with dementia and their carers. TIHM uses machine learning and complex algorithms to detect and predict early signs of ill health. The premise is if changes in a person?s health or routine can be identified early on, support can be targeted at the point of need to prevent the development of more serious complications.

Background:
Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming.

Aim:
To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent.

Design:
A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345).

Data sources:
MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals? experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist.

Results:
The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals? experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals? behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect.

Conclusion:
Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals? needs would enable provision of appropriate support for parents and children.

Effective symptom management is a critical component of cancer treatment.
Computational tools that predict the course and severity of these symptoms have the
potential to assist oncology clinicians to personalize the patient's treatment regimen
more efficiently and provide more aggressive and timely interventions. Three common
and inter-related symptoms in cancer patients are depression, anxiety, and sleep
disturbance. In this paper, we elaborate on the efficiency of Support Vector Regression
(SVR) and Non-linear Canonical Correlation Analysis by Neural Networks (n-CCA) to
predict the severity of the aforementioned symptoms between two different time points
during a cycle of chemotherapy (CTX). Our results demonstrate that these two
methods produced equivalent results for all three symptoms. These types of predictive
models can be used to identify high risk patients, educate patients about their symptom
experience, and improve the timing of pre-emptive and personalized symptom
management interventions.

Background information

The premise of this study was that hearing deterioration, associated with treatment for head and neck cancer, has a negative impact on patients? quality of life. However, there have been no studies to assess this phenomenon in people receiving current UK treatment, and there is little information on the impact of subsequent hearing deterioration.

Objective

This study, conducted in one UK hospital, aimed to investigate the incidence and severity of hearing deterioration, and patient experience of it, following treatment for head and neck cancer.

Design

A sequential mixed methods explanatory design was chosen as it was the most appropriate for addressing the research aims. A critical realist framework underpinned the study. A prospective observational repeated measures design was employed to obtain quantitative data in Phase 1 of the study to assess changes in hearing at the end of treatment, and at 3-month follow-up post-treatment, using pre-treatment test level comparison. The Common Terminology Criteria for Adverse Events (version 4.03) were used to determine the incidence and severity of hearing deterioration. Results from Phase 1 were used to inform selection of participants for Phase 2 of the study. An approach informed by phenomenology using interview methodology, was used to explore patient experience of hearing deterioration.

Study sample

Fifty adults who had been diagnosed with head and neck cancer were recruited to Phase 1 of the study using a consecutive sampling approach. These participants were due to receive standard UK curative radiotherapy (intensity modulated radiotherapy) or chemoradiotherapy (including the use of cisplatin or carboplatin). From the 50 participants recruited, 13 who had hearing deterioration were selected using purposive sampling for one-to-one interviews to obtain in-depth information on their experience of hearing loss.

Results

The incidence of hearing deterioration was 57% in the 42 participants who completed testing at the end of treatment, and 50% percent in those who completed 3-month follow-up testing. At 3-month follow-up, 26% of participants had major (Grade 3) hearing deterioration in at least one ear. Patients who had chemoradiotherapy were more likely to experience hearing deterioration compared with those who had had radiotherapy only (p=0.01). Older patients were more at risk of hearing deterioration than younger participants (p=0.03), but if hearing deterioration occurred it appeared that younger patients suffered more severe deterioration than older patients (p=0.02).

Aural change (including hyperacusis) experienced by some participants during treatment required a change in treatment regimen for them. Participants reporting either minor (Grade 1) or major hearing deterioration were adversely affected by their aural symptoms that manifested with treatment, and the impact of tinnitus (the incidence of which is not covered by existing studies), was extensive in head and neck cancer survivors. Another emerging finding in this study was that middle ear dysfunction, in the early post treatment phase, had a negative impact on patient experience. A further novel finding was that participants with bilateral mild-moderate or moderate severity, mid-high frequency sudden-onset hearing loss required lip-reading to assist their communication.

There was evidence that some participants played down their aural symptoms, yet hearing deterioration had a negative impact on their overall quality of life, including generating a sense of loss (principally in older patients) and isolation (associated with younger patients). Finally, there was varied experience among participants receiving information on their hearing test results and on the process of receiving support for their hearing and tinnitus concerns.

Conclusions and recommendations

This current study provides evidence that could be used to increase awareness of the potential scale and impact of hea

Background:

People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the Internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis, and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process.

Objective:

We explored women?s symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participants? online searches and visited websites, the VIZZATATM browser tracker.

Methods:

An online survey was completed by 56 cancer-free women (Mage = 60.34 years, SD = 7.73 years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (Time1) and again after seeking information online (Time2). The online tracking tool, embedded in the survey, was used to capture in real time participants? search terms and accessed websites.

Results:

The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (n=10, 18%), there was evidence of engagement in online information-seeking, e.g. medical terminology and cancer attribution at Time2, despite their searching activity not being recorded. Twenty five participants considered cancer as a potential cause for the nipple rash at Time1, yet only one of these used ?cancer? as a search term. Most participants (n=40, 87%) used rash-related search terms, particularly ?nipple rash? and ?rash on nipple?. The majority (41/46, 89%) accessed websites containing breast cancer information, with the NHS webpage ?Paget?s disease of the nipple? being the most visited one. At Time2, after engaging in the Internet search task, more participants attributed the nipple rash to breast cancer than at Time1, n=37 (66.1%) vs. n=25 (44.6%), although a small number of participants (n=6) changed from making a cancer attribution at Time1 to a non-cancer one at Time2.

Conclusions:

Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all Internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms.

ClinicalTrial:

N/A

Background: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings.

Objective: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone?based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care.

Methods: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center.

Results: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT.

Conclusions: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.

Purpose: Primary care nurses can contribute to cancer early diagnosis. The objective of this systematic review was to identify, appraise and synthesise evidence on primary care nurses? contribution towards cancer early diagnosis in developed countries.

Method: The following databases were searched in September 2017: MEDLINE, PsychINFO, CINAHL, SCOPUS, and EMBASE. Data were extracted on nurses?: knowledge of cancer; frequency of 'cancer early diagnosis-related discussions' with patients; and perceived factors influencing these discussions. Studies were appraised using the Mixed Methods Appraisal Tool.

Results: Twenty-one studies were included from: United States, United Kingdom, Ireland, Spain, Turkey, Australia, Brazil and Middle East. Studies were mostly of low quality (one did not meet any appraisal criteria, 15 met one, four met two, and one met three). Nurses? knowledge of cancer, and their frequency of ?cancer early diagnosis-related discussions?, varied across countries. This may be due to measurement bias or nurses? divergent roles across healthcare systems. Commonly perceived barriers to having screening discussions included: lack of time, insufficient knowledge and communication skills, and believing that patients react negatively to this topic being raised

Conclusions: Findings suggest a need for nurses to be adequately informed about, and have the confidence and skills to discuss, the topic of cancer early diagnosis. Further high-quality research is required to understand international variation in primary care nurses? contribution to this field, and to develop and evaluate optimal methods for preparing them for, and supporting them in, this.

Background:

With life expectancy continuing to rise in the United Kingdom there is an increasing public health
focus on the maintenance of physical independence among all older adults. Identifying interventions that improve
physical outcomes in pre-frail and frail older adults is imperative.

Methods:

A systematic review of the literature 2000 to 2017 following PRISMA guidelines and registered with
PROSPERO (no. CRD42016045325).

Results:

Ten RCT trials fulfilled selection criteria and quality appraisal. The study quality was moderate to good.
Interventions included physical activity; nutrition, physical activity combined with nutrition. Interventions that
incorporated one or more physical activity components significantly improved physical outcomes in pre-frail and/or
frail older adults.

Conclusions:

Physical activity interventions are key to maintaining independence in pre-frail and frail older adults.
A lack of consensus regarding the definition of frailty, and an absence of core measures to assess this means any
attempt to create an optimal intervention will be impeded. This absence may ultimately impact on the ability of
older and frail adults to live well and for longer in the community.

Background Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children?s emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.

Aim To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent?s death.

Design A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.

Results 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z = -5.767, p Â0001). 22% of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an under-used resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.

Conclusions Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents, and children are needed.

Cancer survivorship is increasing year on year due to an aging population and improvements in cancer screening and treatments. The experience of survivorship can be challenging; individuals living with and beyond cancer can face a burden of survivorship. Cancer survivors not only experience symptom burden (the severity and impact of biopsychosocial consequences of disease and its treatment), there is also evidence that individuals living with
chronic conditions experience treatment burden (the ?work? required of them in managing their condition and its symptoms). Traditional clinic-based approaches to relieving the burden of cancer survivors may not be sustainable or the most beneficial. eHealth interventions are developing exponentially and there is an expectation that they can improve the experience of cancer survivorship. This thesis considers the impact of eHealth supportive care interventions on the burden of those living with and beyond cancer, reporting the experience of adult cancer survivors and the perceptions of health care professionals (HCPs).
Five publications form the body of this thesis. The first publication indicates that while most cancer survivors want to be fully informed many do not receive sufficient information in all areas (e.g. psychosocial issues), thus supporting the consideration of alternative approaches to
providing cancer survivors with supportive care. Two publications report positive impact of a telephone follow-up intervention on the burden of survivorship. Two publications consider HCP perceptions of remote symptom monitoring and internet care plans. These papers report
that HCPs perceive eHealth interventions to increase burden for specific groups of cancer survivors depending on individual patient factors, the context of their care, and the content of the intervention. This body of work supports the potential of eHealth to alleviate the burden of cancer survivors but acknowledges that the complexity of for whom and how these benefits occur warrants exploration through further research. Involving cancer survivors and HCPs in
the development of eHealth supportive care interventions is key to creating and implementing sustainable effective solutions to relieving the burden of future cancer survivors.