Professor Sara Faithfull
Sara Faithfull trained as a cancer nurse in 1986 at the Royal Marsden Hospital (UK) and worked within Oncology in several fields: radiotherapy supportive care and urology. She was the recipient of the Smith and Nephew Nursing fellowship in 1991 and a Cancer Rearch UK Nursing Research Fellowship in 1994. Her PhD study was completed in 2000 at the Institute of Cancer Research in Academic Radiotherapy. As a board member of the European Oncology Nursing Society (EONs) from 2003-2011 she was president from 2008-10.
Sara continues to support health sciences through work with national, European and International partners. Sara Faithfull is an expert member for the cardiac guidance for GPs for cancer patients as part Macmillan Cancer Support. She is a congress faculty member of the European Society for Radiotherapy and Oncology (ESTRO) and is member of the European Oncology Nursing Society (EONS). As a member of the Royal College of Nursing (RCN) she is proud to support nursing innovation and new roles. In 2010 an edition of Cancer World featured Faithfull's work on health assessment in a feature and in 2011 she was awarded the Bob Tiffany Annual lecture for cancer research and education at the Royal Marsden NHS Foundation Trust.
Sara Faithfull's current programme of research is in clinical innovation, addressing challenges in early diagnosis and consequences of cancer treatment. Funded research is in cancer survivorship, functional health assessment and lifestyle interventions for men with prostate cancer. Studies test new approaches to side effect and multi- morbidity management as a consequence of cancer treatment as well as developing novel approaches to improving patient outcomes. Research expertise is in mixed methods, complex intervention development and clinical trials. Key drivers of her work are to introduce and test complex interventions in practice with the aim to improve speed with which innovations can be adopted in patient care pathways.
The objective of her work is to improve the health of those with cancer, empower them in taking control of their illness by using new technologies to inform those affected by cancer develop self management skills to support needs and prevent long-term problems. Alongside this she is developing health professional's competencies in managing long-term effects of cancer treatment with the use of clinical tools to support and inform health services. This research provides a strong interdisciplinary approach to health science and applied research.
A strand of her research is in relation to the development of the methodology for Patient Reported Outcomes (PROs) in radiotherapy and how assessment through PROs can guide clinical decision making and provide triage for different levels of service and support after cancer treatment. Innovative work with the Faculty of Engineering has allowed the development of an innovative dynamic mathematical modelling technique using the concept of symptom clusters for patient reported outcome measures.
Teaching within the University programmes is on clinical innovation and multi morbidity with the chronic illness and cancer chemotherapy modules. I have an interest on experiential teaching techniques such as immersive simulation and work is ongoing to develop this pedagogical approach to learning.
Purpose: To identified the unmet supportive care needs of people with cancer pain; and to explore the relationship between symptoms such as pain and unmet supportive care needs.
Method: A quantitative approach has been used to explore the unmet supportive care needs of people with cancer pain. One hundred and sixty two people, who required around the clock analgesia, completed a validated needs assessment tool, at two Time Points, in order to investigate whether they had any issues or problems that they required further assistance with over a 2 month period. The data was analysed using descriptive statistics and backwards logistic regression.
Findings: Eighty percent of the participants had at least 1 unmet need. The main areas where people needed more help were in the psychological and physical daily living domains. Psychologically, people had concerns about their loved ones and uncertainly about their future. Physically, people wanted more help with fatigue and not being able to do their usual activities. People with uncontrolled pain and breakthrough pain equally needed as much help in these areas, emphasising that even if people only have intermittent pain it has a huge impact on a person?s psychological and physical wellbeing. The participants? unmet needs improved over time but this was not dependant on a change in the control of pain.
Conclusion: The psychosocial needs of people with cancer pain are not being met if they have uncontrolled or breakthrough pain. Pain assessments should include an assessment of unmet needs. However, due to the subject nature of unmet needs it is difficult to demonstrate that that inventions, that are intended to reduce unmet needs, are effective.
of cardiometabolic complications of androgen deprivation therapy
for prostate cancer, Nutr Res Rev 30 (2) pp. 220-232 Cambridge University Press
also been associated with the development of cardiometabolic complications that can increase mortality from cardiovascular events. There is
emerging evidence to suggest that ADT-related cardiometabolic risk can be mitigated by diet and lifestyle modification. While the clinical
focus for a nutritional approach for achieving this effect is unclear, it may depend upon the timely assessment and targeting of dietary changes
to the specific risk phenotype of the patient. The present review aims to address the metabolic origins of ADT-related cardiometabolic risk,
existing evidence for the effects of dietary intervention in modifying this risk, and the priorities for future dietary strategies.
of cancer survivors. Techniques to predict symptoms, with the aim of providing triage care, rely on the ability to analyse trends in symptoms or quality of life and at present are limited. The secondary analysis in this study uses a statistical method involving the application of autoregression (AR) to PROMs in order to predict symptom intensity following radiotherapy, and to explore its feasibility as an analytical tool. The technique is demonstrated using an existing dataset of 94 prostate cancer patients who completed a validated battery of PROMs over time. In addition the relationship between symptoms was investigated and symptom clusters were identified to determine their value in assisting predictive modeling. Three symptom clusters, namely urinary, gastrointestinal and emotional were identified. The study indicates that incorporating symptom clustering into predictive modeling helps to identify the most informative predictor variables. The analysis also showed that the degree of rise of symptom intensity during radiotherapy has the ability to predict later radiotherapy-related symptoms. The method was most successful for the prediction of urinary and gastrointestinal symptoms. Quantitative or qualitative prediction was possible on different symptoms. The application of this technique to predict radiotherapy outcomes could lead to increased use of PROMs within clinical practice. This in turn would contribute to improvements in both patient care after radiotherapy and also strategies to prevent side effects. In order to further evaluate the predictive ability of the approach, the analysis of a larger dataset with a longer follow up was identified as the next step.
Methods: We co-created a film based on phenomenological interviews with seven men who had volunteered to support other men by sharing their experiences of coping with prostate cancer. The film contributed to successful engagement with self-management. Interpretative Phenomenological Analysis of the interview data was conducted to explore the components of experiential empathy that the men had communicated.
Results: Four themes were identified illustrating what men wanted other men to know about coping with prostate cancer: Going into the unknown, it was difficult but I got through highlighted trauma and the importance of having a determined attitude; Only you can do it illustrated the triumph of their journey and of regaining control; I haven?t changed massively reflected the importance of a constant self; and Stay involved represented the overriding need to remain part of pre-cancer social environments.
Conclusions: We propose a construct framework of experiential empathy for men with prostate cancer: Resilience, Regaining Control, Continuity-of-Self and Social Connectedness. Filmed peer support that communicates these constructs will offer wide-ranging benefit to meet the needs of this group of men in both e-health and face-to-face self-management contexts. Further research could develop this theory-driven approach to filmed peer support for other cancer groups.
Persistent Symptoms of Chemotherapy-Induced
Peripheral Neuropathy, Journal of Clinical Oncology 35 (23) pp. 2604-2612 American Society of Clinical Oncology
Chemotherapy-induced peripheral neuropathy (CIPN) may persist after treatment ends and may lead
to functional decline and falls. This study compared objective and self-report measures of physical
function, gait patterns, and falls between women cancer survivors with and without symptoms of
CIPN to identify targets for functional rehabilitation.
A secondary data analysis of 512 women cancer survivors (age, 62 6 6 years; time since diagnosis,
5.8 6 4.1 years) categorized and compared women self-reporting symptoms of CIPN (CIPN+) with
asymptomatic women (CIPN2) on the following: maximal leg strength, timed chair stand, physical
function battery, gait characteristics (speed; step number, rate, and length; base of support), selfreport
physical function and disability, and falls in the past year.
After an average of 6 years after treatment, 47% of women still reported symptoms of CIPN. CIPN+
had significantly worse self-report and objectively measured function than did CIPN2, with the
exception of maximal leg strength and base of support during a usual walk. Gait was slower among
CIPN+, with those women taking significantly more, but slower and shorter, steps than did CIPN2
(all P,.05). CIPN+ reported significantly more disability and 1.8 times the risk of falls compared with
CIPN2 (P , .0001). Increasing symptom severity was linearly associated with worsening function,
increasing disability, and higher fall risk (all P , .05).
This work makes a significant contribution toward understanding the functional impact of CIPN
symptoms on cancer survivors. Remarkably, 47% of women in our sample had CIPN symptoms
many years after treatment, together with worse function, greater disability, and more falls. CIPN
must be assessed earlier in the clinical pathway, and strategies to limit symptom progression and to
improve function must be included in clinical and survivorship care plans.
Patients receiving cancer treatment often have one or more co-morbid conditions that are treated pharmacologically. Co-morbidities are recorded in clinical trials usually only at baseline. However, co-morbidities evolve and new ones emerge during cancer treatment. The interaction between multi-morbidity and cancer recovery is significant but poorly understood.
To investigate the effect of co-morbidities (e.g. cardiovascular and diabetes) and medications (e.g. statins, antihypertensives, metformin) on radiotherapy-related toxicity and long-term symptoms in order to identify potential risk factors. The possible protective effect of medications such as statins or antihypertensives in reducing radiotherapy-related toxicity will also be explored.
Two datasets will be linked. 1) CHHiP (Conventional or Hypofractionated High Dose Intensity Modulated Radiotherapy for Prostate Cancer) randomised control trial. CHHiP contains pelvic symptoms and radiation-related toxicity reported by patients and clinicians. 2) GP (General Practice) data from RCGP RSC (Royal College of General Practitioners Research and Surveillance Centre). The GP records of CHHiP patients will be extracted, including cardiovascular co-morbidities, diabetes and prescription medications. Statistical analysis of the combined dataset will be performed in order to investigate the effect.
Linking two sources of healthcare data is an exciting area of big healthcare data research. With limited data in clinical trials (not all clinical trials collect information on co-morbidities or medications) and limited lengths of follow-up, linking different sources of information is increasingly needed to investigate long-term outcomes. With increasing pressures to collect detailed information in clinical trials (e.g. co-morbidities, medications), linkage to routinely collected data offers the potential to support efficient conduct of clinical trials.
beliefs about how changes to their bodies and symptoms influence
help-seeking actions. A narrative review of the literature, European Journal of Oncology Nursing (EJON) 30 pp. 48-58 Elsevier
their bodies relevant to prostate cancer and how these affect interpretation of bodily changes and helpseeking
Method: We undertook a narrative review of studies conducted from 2004 to 2017 in 6 databases that
highlighted men's beliefs and help-seeking actions for bodily changes suggestive of prostate cancer.
Results: Eighteen (18) studies reflecting men from various ethnicities and nationalities were included.
The belief that blood and painful urination were warning signs to seek medical help delayed helpseeking
among men compared to men that did not experience these symptoms. The belief that urinary
symptoms such as dribbling, cystitis and urinary hesitancy were transient and related to ageing,
normality and infection significantly delayed symptom appraisal and help-seeking. Men also held the
belief that sexual changes, such as impotence and ejaculation dysfunction were private, embarrassing
and a taboo. These beliefs impeded timely help-seeking. Cultural beliefs, spirituality and the role of
wives/partners were significant for men to help appraise symptoms as requiring medical attention thus
sanctioning the need for help-seeking.
Conclusions: This review underscores a critical need for further empirical research into men's beliefs
about bodily changes relevant to prostate health and how these beliefs affect their interpretation of
symptoms and subsequent help-seeking actions.
Older adults live with multimorbidity including frailty and cognitive impairment often requiring hospitalization. While physical activity interventions (PAIs) are a normal rehabilitative treatment, their clinical effect in hospitalized older adults is uncertain.
To observe PAI dosing characteristics and determine their impact on clinical performance parameters.
A single-site prospective observational cohort study in an older persons' unit.
Seventy-five older persons' unit patients e65 years.
PAI; therapeutic contact between physiotherapy clinician and patient.
Parameters included changes in activities-of-daily-living (Barthel Index), handgrip strength, balance confidence, and gait velocity, measured between admission and discharge (episode). Dosing characteristics were PAI temporal initiation, frequency, and duration. Frailty/cognition status was dichotomized independently per participant yielding 4 subgroups: frail/nonfrail and cognitively-impaired/cognitively-unimpaired.
Median (interquartile range) PAI initiation occurred after 2 days (1-4), frequency was 0.4 PAIs per day (0.3-0.5), and PAI duration per episode was 3.75 hours (1.8-7.2). All clinical parameters improved significantly across episodes: grip strength median (interquartile range) change, 2.0 kg (0.0-2.3) (P
PAI dosing is consistent. However, while clinical changes during hospital episodes are positive, more favourable responses to PAIs occur if patients are nonfrail/cognitively-unimpaired. Therefore, to deliver a personalized rehabilitation approach, adaptation of PAI dose based on patient presentation is desirable.
trial of a nurse-led psycho-educational intervention (PROSPECTIV), European Journal of Oncology Nursing 32 pp. 73-81 Elsevier
This study sought to test the acceptability and feasibility of a nurse-led psycho-educational intervention
(NLPI) delivered in primary care to prostate cancer survivors, and to provide preliminary estimates of the effectiveness
of the intervention.
Men who reported an ongoing problem with urinary, bowel, sexual or hormone-related functioning/
vitality on a self-completion questionnaire were invited to participate. Participants were randomly assigned to
the NLPI plus usual care, or to usual care alone. Recruitment and retention rates were assessed. Prostate-related
quality of life, self-efficacy, unmet needs, and psychological morbidity were measured at baseline and 9 months.
Health-care resource use data was also collected. An integrated qualitative study assessed experiences of the
61% eligible men (83/136) participated in the trial, with an 87% (72/83) completion rate. Interviews
indicated that the intervention filled an important gap in care following treatment completion, helping men to
self-manage, and improving their sense of well-being. However, only a small reduction in unmet needs and small
improvement in self-efficacy was observed, and no difference in prostate-related quality of life or psychological
morbidity. Patients receiving the NLPI recorded more primary care visits, while the usual care group recorded
more secondary care visits. Most men (70%; (21/30)) felt the optimal time for the intervention was around the
time of diagnosis/before the end of treatment.
Findings suggest a nurse-led psycho-educational intervention in primary care is feasible, acceptable
and potentially useful to prostate cancer survivors.
To identify symptom clusters and predisposing factors associated with long-term symptoms and health-related quality of life (HRQOL) following radiotherapy in men with prostate cancer.
Patient-reported outcomes (PROs) data from the Medical Research Council RT01 radiotherapy with neoadjuvant androgen deprivation therapy (ADT) trial of 843 patients were used. PROs were collected over 5 years with the University of California, Los Angeles Prostate Cancer Index (UCLA-PCI) and the 36-Item Short-Form Health Survey (SF-36). Symptom clusters were explored using hierarchical cluster analysis (HCA). The association of treatment dose, baseline patient characteristics and early symptom clusters with the change in severity of PROs over three years was investigated with multivariate linear mixed effects models.
Seven symptom clusters of three or more symptoms were identified. The clusters were stable over time. The longitudinal profiles of symptom clusters showed the onset of acute symptoms during treatment for all symptom clusters and significant recovery by six months. Some clusters such as Physical Health and Sexual Function were adversely affected more than others by ADT, and were less likely to return to pre-treatment levels over time. Older age was significantly associated with decreased long-term Physical Function, Physical Health and Sexual Function (p
Men with poorer physical function and health prior to or during treatment were more likely to report poorer PROs at year three. Early assessment using PROs and lifestyle interventions should be employed to identify those with higher needs and provide targeted rehabilitation and symptom management.
Cancer Treatment: Development and Feasibility of the Getting
Down to Coping Program in Two Different Clinical Settings, JMIR Cancer 4 (1) e8 JMIR Publications
Objective: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured.
Methods: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed Results: A total of 135 men consented (phase I, 61/432, 14.1%; phase II, 74/606, 12.2%); from 96 eligible men screened for distress, 32% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63% (mean 2.5, SD 1.9) versus 92% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77% (mean 16.1, SD 6.2) versus 88% (mean 18.6, SD 3.9). Chat room activity occurred among 63% (5/8) and 75% (12/16) of men, respectively. In phase I, 75% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=?.55; phase II, P=.001, r=?.59. Self-efficacy improved for coping P=.02, r=?.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles.
Conclusions: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness.
This qualitative study explored the transitions experienced by people with ESKD as they approached the end of their lives. A constructivist grounded theory methodology was used, and unstructured interviews were conducted with twelve people living with ESKD who were deemed to be approaching the end of their lives. The interview data were analysed and interpreted using the constant comparative method.
The core category of ?restructuring reality? emerged from the data analysis alongside three dynamic, interrelated conceptual categories and the subcategories within these. These conceptual categories were: ?striving to maintain autonomy and control in decision making?, ?managing uncertainty: knowing without clarity or confirmation?, and ?the importance of personal virtues in transitioning through the illness?. The substantive theory which emerged from the data analysis and which conceptualised the process and experience of transition for people with ESKD in this study was defined as 'the restructuring of reality during transition for people with ESKD approaching the end of life?.
The study findings provided valuable insight into the experience of people with ESKD as they approach the end of their lives. The tentative theory presented in this study added to the knowledge of the transitions experienced by people with ESKD as they approached the end of their life. The theory captured how participants made sense of and adjusted to the changes they experienced as their health deteriorated; it emphasised that being able to continue to contribute and be involved in decision-making about care was an important aspect of the transition process as people approached the end of their lives. The study findings also highlighted the importance of healthcare professionals undertaking end of life discussions with patients throughout their illness trajectory to ensure people with ESKD are afforded the opportunity to be involved in timely decision making and provided with good quality end of life care.
Background: Neurodegenerative diseases are incurable, debilitating and result in progressive deterioration of the patient which present as problems with cognitive functioning (dementias) and/or physical functioning (ataxias). To allow quality of life and purpose for the patient and caregiver, as well as providing value for money, respite is an area of care which could offer the patient rehabilitation, maximisation of functionality and quality of life; relief from caregiving duties for the carer and signposting for additional assistance and support.
Methods: This was a qualitative, grounded theory study conducted across south east England. An initial audit, attendance at support groups and specialist clinics provided scoping of the scale of the problems encountered by this patient population. Data collection included 17 semi structured interviews conducted with patients and carers who had recently received residential respite, non-participant observation at a hospice offering dedicated respite care and 4 hospice staff interviews.
Findings: A successful respite depended on the patient and carer identifying the need for respite and the information required to determine where, what, when and how respite could be accessed. The logistics of the referral process, preparation for respite and the handover of care needs to professionals were key factors for a therapeutic admission.
Conclusion: The outcomes from the respite admission should be mutually acceptable to both the patient and carer and be able to demonstrate acceptance and adaptation to a new normalcy, influenced by disease progression and reflecting on time present and time past. The onward journey sees a transitioning which involves restoration and building up a level of resilience for the carer, which all contribute to sustainability and being able to continue in the caring role.
Method: A two phase quantitative research design.
Phase 1: tested; (i) the reproducibility of the spectrophotometer for eight subjects (n=48) scans; from four ethnic groups White, Chinese, Asian and Black. (ii) minimum silicone-skin sample thickness for colour scanning; and (iii) reproducibility of simulated silicone-skin samples formulae recipe.
Phase 2: Determine the perceptible and acceptable colour match difference between colour silicone-skin samples and human skin for 8 subjects'; from baseline colour scan, an in-built colour L*a*b* gradient scales 0-8 at 0.5 ?E increments were formulated. Silicones samples (n=776) were processed; perceptible and acceptable colour difference (?E) assessed by (n=12) colour assessors.
Results: The spectrophotometer skin colour scans for White, Chinese Indian and Black ethnic groups demonstrated positive correlation (r=0.99). Scanner reproducibility for the eight subjects, Mean ± SD, ?E maximum (1.43 ± 0.63), to minimum (0.47 ± 0.21); colour formulae silicone sample achieved an acceptable colour match of 0.43 ?E to 1.36 ?E. The minimum silicone sample thickness (mm); for light to dark skin tones was 8 mm (White 6 mm; Black 8 mm). Pigment formula-sample reproducibility (Mean ?E and SD) maximum (1.36 ± 0.29), minimum (0.43 ± 0.16).
The acceptable colour difference threshold for skin simulated medical elastomers for four ethnic groups 1.54 ?E, White 1.61 ?E; Chinese 1.87 ?E; Indian was not detectable; and Black 2.33 ?E. Perceptible and acceptable colour difference (L*a*b*) CIE for L* (Light/dark) for all subjects 1.68 to 3.18 ?E; for a* (red/green), the scores were below 2 cut off point (not acceptable); and for b* (blue/yellow) 1.58 to 0.51 ?E.
Conclusion: This study has established the reproducibility of the Spectromatch digital colour system; and objectively defined the perceptible and acceptable (?E) thresholds (1) for facial prosthetics (Mean ?E 1.54), (2) the relationship to human eye sensitivity and the perceptibility / acceptability for silicone-skin colour match for maxillofacial prosthetics.
Methods: Utilising Straussian grounded theory, semi-structured and focus-group interviews were conducted with men (n= 51) diagnosed with PCa and partners (n=16) at four (urology & oncology) centres throughout TT in 2015-2016.
Results: Five categories: ?Disrupting the Self?, ?Disconnected to Health Services?, ?The Silent Wall?, ?Blame and Distrust? and ?Breaking the Silence? and a core category, ?Silence among Afro-Caribbean men? (SAACM) were generated from the data. These connect with men?s late presentation of PCa at emergency services with severe and life-limiting symptoms associated with high mortality rates for this disease. The main reasons underlying men?s late presentation to health services with debilitating symptoms, concern masculinity norms, lack of awareness and knowledge of early stage PCa, cultural beliefs and practices and perceptions of an uncaring health system. These heavily influenced men?s ability to access care and move through routes to diagnosis for PCa in TT.
Conclusion: The SAACM offers unique insight into identifying how men?s cultural beliefs, hegemonic masculinity and lack of knowledge and awareness of the prostate and PCa resulted in delays in help-seeking and subsequently late diagnosis. A better understanding of men and their partners? experiences along routes to diagnosis for PCa can target specific public health messages to address barriers to early diagnosis for men.
Key words: Trinidad and Tobago, experiences, beliefs, culture, silence
It is well established that exercise and lifestyle behaviours improve men's health outcomes from prostate cancer. With 3.8 million men living with the disease worldwide, the challenge is creating accessible intervention approaches that lead to sustainable lifestyle changes. We carried out a phase II feasibility study of a lifestyle intervention delivered by nine community pharmacies in the United Kingdom to inform a larger efficacy study. Qualitative interviews explored how men experienced the intervention, and these data are presented here.
Community pharmacies delivered a multicomponent lifestyle intervention to 116 men with prostate cancer. The intervention included a health, strength, and fitness assessment, immediate feedback, lifestyle prescription with telephone support, and reassessment 12 weeks later. Three months after receiving the intervention, 33 participants took part in semistructured telephone interviews.
Our framework analysis identified how a teachable moment can be created by a community pharmacy intervention. There was evidence of this when men's self?perception was challenged and coupled to a positive interaction with a pharmacist. Our findings highlight the social context of behaviour change with men identifying how their lifestyle choices were negotiated within their household. There was a ripple effect as lifestyle behaviours made a positive impact on friends and family.
The teachable moment is not a serendipitous opportunity but can be created by an intervention. Our study adds insight into how community pharmacists can support cancer survivors to make positive lifestyle behaviour changes and suggests a role for doing rather than just telling.