The experience of chemotherapy-induced peripheral neuropathy in adult cancer patients: a qualitative thematic synthesis.

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.

The symptom phenotype of oncology outpatients remains relatively stable from prior to through 1 week following chemotherapy.

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.

Managing fatigue after cancer treatment: development of RESTORE, a web-based resource to support self-management.

OBJECTIVE: The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. METHODS: A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. RESULTS: Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. CONCLUSIONS: It is feasible to systematically 'co-create' an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted.

Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff.

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.

Life coaching following haematopoietic stem cell transplantation: a mixed-method investigation of feasibility and acceptability.

Haematopoietic stem cell transplantation (HSCT) cures many haematological cancers. Recovery post-HSCT is physically and psychologically challenging, lasting several months. Beyond the first post-transplant year, a fifth report difficulties encompassing practical, social and emotional domains, including finance and employment. We investigated the feasibility, acceptability and impact of a life coaching intervention designed to address psychosocial 'survivor' concerns of HSCT recipients and facilitate transition to life post-treatment. A concurrent embedded experimental mixed-method design was employed. Pre- and post-intervention data collection comprised qualitative semi-structured telephone interviews and quantitative postal questionnaires. Seven purposively sampled HSCT recipients (<18 months) participated, reporting on one-to-one life coaching delivered by a professional life coach fortnightly over 8 weeks. Participants reported less anxiety, depression and fewer survivor concerns post-intervention, with a trend for lower social difficulties and increased functional well-being. Perceived self-efficacy was unchanged. Life coaching was feasible to deliver and acceptable to the participants who indicated it was a positive experience, with benefits described in diverse areas including work, lifestyle and hobbies. Life coaching within cancer services potentially offers the means to address psychosocial concerns and support transition to life after treatment, enabling patients to reach their potential, e.g. returning to employment and financial independence. Further investigation of this intervention in cancer survivors is warranted.

A randomized, controlled trial of acupuncture self-needling as maintenance therapy for cancer-related fatigue after therapist-delivered acupuncture.

BACKGROUND: Maintenance acupuncture is advocated by clinicians after successful clinic-based acupuncture. We aimed to assess the effectiveness of maintenance acupuncture in the management of cancer-related fatigue (CRF); treatment delivered by therapists or self-acupuncture/self-needling was compared with no maintenance treatment. METHODS: Breast cancer patients who participated in a randomized trial of acupuncture for CRF management (reported elsewhere) were re-randomized to receive an additional four acupuncturist-delivered weekly sessions; four self-administered weekly acupuncture sessions (self-needling); or no acupuncture. Primary outcome was general fatigue (Multidimensional Fatigue Inventory). Mood, quality of life and safety were also assessed. RESULTS: In total, 197 patients were re-randomized, with 65 to therapist-delivered sessions, 67 to self-acupuncture/self-needling and 65 to no further acupuncture. Primary outcome scores were equivalent between the therapist-delivered acupuncture and self-acupuncture (P > 0.05). A non-significant trend in improving fatigue was observed at the end of 4 weeks in the combined acupuncture arms (P = 0.07). There was no impact on mood or quality of life of the further acupuncture sessions at 18 weeks beyond the improvement observed in initial trial. CONCLUSION: Self-acupuncture is an acceptable, feasible and safe maintenance treatment for patients with CRF. However, overall, maintenance acupuncture did not yield important improvements beyond those observed after an initial clinic-based course of acupuncture. TRIAL REGISTRATION NUMBER: NCT00957112.

Informal carers' experiences and needs when supporting patients through chemotherapy: a mixed method study.

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.

Nurses' experience of delivering a supportive intervention for family members of patients with lung cancer.

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.

Supportive care needs of men living with prostate cancer in England: a survey.

Men with prostate cancer have various treatment options depending upon their stage of disease, age and presence of comorbidity. However, these treatments typically induce side effects, which generate currently ill-defined supportive care needs. This study examined the supportive care needs of men with prostate cancer within England. A postal questionnaire survey was conducted in six acute NHS Trusts. Seven hundred and forty-one men with prostate cancer participated. They had been diagnosed 3-24 months prior to the survey and had received various treatments. Men surveyed had specific and significant unmet supportive care needs. Areas of greatest need are related to psychological distress, sexuality-related issues and management of enduring lower urinary tract symptoms. High levels of psychological distress were reported, and those reporting psychological distress reported greater unmet supportive care needs. Unmet sexuality-related need was highest in younger men following radical prostatectomy. Lower urinary tract symptoms were almost universal in the sample. Perceived quality of life varied; men unsure of their remission status reported lowest quality of life. Psychological distress impacts significantly on perceived unmet need and is currently not being assessed or managed well in men living with prostate cancer in England.

Assessing fatigue in inflammatory bowel disease: comparison of three fatigue scales.

BACKGROUND: Fatigue is commonly reported by patients with inflammatory bowel disease (IBD), both in quiescent and active disease. Few fatigue scales have been tested in IBD. AIM: To assess three fatigue assessment scales in IBD and to determine correlates of fatigue. METHODS: Potential participants (n = 2131) were randomly selected from an IBD organisation's members' database; 605 volunteered and were posted three fatigue scales: Inflammatory Bowel Disease Fatigue scale, Multidimensional Fatigue Inventory and Multidimensional Assessment Fatigue scale and questionnaires assessing anxiety, depression, quality of life (QoL) and IBD activity. The questionnaires were tested for stability over time with another group (n = 70) of invited participants. Internal consistency was measured by Cronbach's alpha and test-retest reliability by the intraclass correlation coefficient (ICC). RESULTS: Four hundred and sixty-five of 605 (77%) questionnaires were returned; of 70 invited, 48/70 returned test (68.6%) and 41/70 (58.6%) returned retest. The three scales are highly correlated (P < 0.001). Test-retest suggests reasonable agreement with ICC values between 0.65 and 0.84. Lower age, female gender, IBD diagnosis, anxiety, depression and QoL were associated with fatigue (P < 0.001) on univariable analysis. However, on multivariable analysis only depression and low QoL were consistently associated with fatigue, while female gender was associated on most scales. IBD diagnosis, age and other factors were not consistently associated with severity or impact of fatigue once other variables were controlled for. CONCLUSIONS: All three fatigue scales are likely to measure IBD fatigue adequately. Responsiveness to change has not been tested. Depression, poorer QoL and probably female gender are the major associations of fatigue in IBD.

Fatigue in adolescents with and following a cancer diagnosis: developing an evidence base for practice.

Although fatigue has been a focus for research in adult cancer care for some time, the same cannot be said for adolescent oncology practice. This paper summarises the literature concerning fatigue in adolescents with, and following, cancer diagnoses, drawing on data from four empirical studies. Fatigue is multidimensional, multifactorial and highly subjective, but can be managed to enhance self-caring and coping strategies. All of the studies reviewed within indicate that fatigue is a troublesome symptom, which impacts on quality of life. From this review, we set up a research study. This paper provides a brief report of preliminary data from this study drawn from a group of adolescents in late remission from childhood cancer. These data are used to evaluate the utility of focus groups as a method of data collection in exploring the concept of fatigue in adolescents. Concurring with the studies we reviewed, findings from the preliminary data suggest that fatigue is a highly subjective and 'abnormal' phenomenon that holds a variety of implied meanings and associated metaphors connected with past experiences of childhood cancer. The focus group proved to be a viable research method to facilitate mutual disclosure and provoke discussion. Recognition of the research challenges with adolescents, where there is the potential for a range of meanings for the experience of fatigue, is an important finding for future studies.

Fatigue in patients receiving chemotherapy: patterns of change.

Fatigue is reported to be a significant and distressing problem for people receiving chemotherapy, but the phenomenon is poorly understood and little is known about the factors influencing it. Nurses need to understand the dimensions of fatigue in order to provide effective help for individuals with cancer who experience it. This article describes a study that employed a daily diary with the aim of prospectively charting the onset, pattern, duration, intensity, and distress associated with fatigue in 109 patients receiving chemotherapy. The diary comprised four visual analogue scales measuring selected dimensions of fatigue: extent of fatigue, distress caused by fatigue, the influence of fatigue on the ability to engage in social activities, and the impact of fatigue on work-related activities. The patients' diaries produced detailed time series of data that captured the dynamics of their fatigue. Analyses of these data revealed the patterns of fatigue after the administration of chemotherapy, which appear strongly related to both the timing of treatment and the manner in which cytotoxic agents are administered. Furthermore, Kruskal-Wallis tests performed to compare fatigue among subgroups of patients revealed that it is statistically associated with particular types of cancer, specific chemotherapy regimens, and certain methods of drug administration. Fatigue varied throughout the day, more frequently occurring in the afternoon and early evening. These insights, gained during this study about the likely pattern of fatigue in the period after the administration of chemotherapy, and the potential benefits of maintaining a fatigue diary could be utilized by nurses engaged in the care of chemotherapy patients.

From theory to practice: designing interventions to reduce fatigue in patients with cancer.

PURPOSE/OBJECTIVES: To review the evidence available to guide the development of interventions to alleviate cancer-related fatigue. DATA SOURCES: Published fatigue theories and research describing patients' self-care strategies and the efficacy of interventions for the management of fatigue. DATA SYNTHESIS: Fatigue is a pervasive problem for patients with cancer. Without guidance, patients adopt common-sense strategies that generally prove unsuccessful in alleviating fatigue. Theories that identify self-care actions that can reduce fatigue are becoming increasingly sophisticated. A small number of strategies, most notably exercise, has been evaluated. Other interventions--educational, attention-restoring, and psychosocial--have been tested to a lesser extent. The theoretical foundations of these experimental studies frequently are unclear. However, primary evidence is favorable and supports further evaluation. CONCLUSIONS: Passive approaches frequently fail to reduce fatigue in patients with cancer. Alternative approaches based on the growing body of theoretical and research evidence should be adopted. IMPLICATIONS FOR NURSING PRACTICE: Patients require guidance in managing cancer-related fatigue. Nurses need to develop and evaluate relief interventions. Systematic research programs based on sound theoretical premises and previous research will contribute to the growing body of evidence to aid future management of this troublesome symptom.

The experiences of patients and nurses with a nurse-led peripherally inserted central venous catheter line service.

Nurse-led Peripherally Inserted Central Venous Catheter (PICC) services are becoming commonplace in cancer centres across the UK. Research has shown that these services are cost-effective and are associated with fewer catheter-related complications, including infection and thrombosis, than skin-tunnelled catheters. This exploratory study aimed to explore patients' and nurses' experiences of a nurse-led PICC line service. Recorded interviews were conducted with 10 cancer patients with PICC lines inserted, five hospital-based nurses and five community-based nurses experienced in caring for patients with these lines. Respondents' recorded accounts were transcribed, coded and analysed to determine patients' and nurses' perceptions of the service and the extent to which collaborative practice was promoted. Findings were synthesized into five themes: Education, Formation of Expectations, Confidence, Sensory Experience and Adaptation. All respondent groups were positive about the PICC line service and the specialist oncology nurses working within it. The findings did identify some aspects of the service which could be improved, including the timing of information given to patients and the use of more innovative educational approaches. This study has informed the development of a potential flexible service structure which may be incorporated into established and differing care settings using existing resources.

Fatigue: a concept analysis.

Fatigue is probably the most common symptom of illness affecting sufferers of both acute and chronic conditions. However, confusion surrounds the definition and use of the term fatigue. As with many other nursing concepts, it is a word that is commonly used in colloquial language. This concept analysis aims to identify the attributes that are essential to the concept of fatigue, and to distinguish between its colloquial and its nursing usage by following the strategy suggested by Walker and Avant (1995, Strategies for Theory Construction in Nursing, Appleton Lange, London). A review of the literature identifies nursing uses of the term fatigue which reflect and conflict with colloquial uses. Defining attributes, demonstration cases, antecedents, consequences and empirical referents are identified before a definition of fatigue is developed and proposed for nursing. This clarification of the phenomenon has particular relevance for clinical nursing, future research and the development of fatigue theories.

Fatigue in patients with cancer and chronic obstructive airways disease: a phenomenological enquiry.

Fatigue is frequently experienced by patients with chronic illnesses, and especially by patients with cancer and chronic obstructive airways disease. However, there is a paucity of qualitative research into the experiences of fatigued individuals and, consequently, definitions of fatigue have, to date, been based solely on observation and conjecture. The purpose of this study was to capture a detailed description of the fatigue experienced by individuals with cancer and chronic obstructive airways disease. A phenomenological research design was adopted. The findings presented in this paper depict fatigue as a complex phenomenon. The paper describes the physical and mental sensations embodied in fatigue, the impact of fatigue on everyday functioning, the emotional feelings evoked by fatigue and the impact of fatigue on perceived control. These findings have relevance for clinical nursing and future research.

Self-care behaviours initiated by chemotherapy patients in response to fatigue.

Patients receiving chemotherapy for the treatment of cancer frequently experience severe fatigue which is highly disruptive and distressing. Few studies have investigated the strategies which patients personally initiate to enable them to cope with this symptom. This paper reports the results derived from a study designed to monitor and describe patients' fatigue during chemotherapy and the self-care measures taken by them to ameliorate it. Data were collected from 109 subjects receiving different chemotherapy protocols using structured diaries. A variety of self-care behaviours were practised and these frequently included modifying or altering activity and rest patterns and employing strategies of a psychological nature. However, the self-care strategies initiated proved largely ineffective. This study indicates that common-sense measures often prove insufficient. Intervention studies are required to evaluate the best ways for health professionals to assist these patients to live with and adapt to fatigue.

Nurses' infection-control practice: hand decontamination, the use of gloves and sharp instruments.

Infection is an acknowledged hospital problem. Micro-organisms are disseminated mainly via hands but there is evidence that hand decontamination, the most important means of prevention, is performed too seldom, and not always after activities likely to result in heavy contamination. Nurses themselves are exposed to risks of infection, chiefly through contact with blood and body fluids, yet it has also been reported that gloves are not always worn during contact with patients' secretions and that the handling and disposal of sharp instruments may be performed unsafely. The study reported in this paper documents nursing behaviour in relation to hand decontamination, the use of gloves and sharps, taking into consideration a number of variables which could influence practice: availability of the expertise afforded by an infection-control nurse, clinical setting, nursing workload, knowledge and the resources available to control infection. Hands were decontaminated after 28.78% of patient contacts. Hands were decontaminated after 49.85% of activities likely to result in heavy contamination. Performance was related to nursing workload and the availability of hand decontaminating agents, especially when the nurses became busy. Use of gloves when they were available also proved good, with little evidence of wasteful use. The handling and disposal of sharps were commendable for most subjects but a few grossly unsafe incidents were nevertheless witnessed, apparently not associated with any of the variables examined.

Assessing nurses' hand decontamination performance.

There have been numerous attempts to assess the frequency and technique of nurses' hand decontamination, but criteria employed to define acceptable levels of practice are questionable, while comparisons between staff in different clinical settings appear never to have been undertaken. In the study reported here tight criteria were developed to evaluate performance, then used to compare nurses employed in three clinical settings: intensive care, surgical and medical units. Two hospitals were employed, one with an infection control nurse, the other without. Frequency was highest in the ICU of the second hospital, but technique was superior in ICUs regardless of hospital. Half of all opportunities for essential decontamination were, however, omitted. Technique appeared superior to earlier reports. Alcoholic hand-rub was readily available and used more often in the unit where the best practice was witnessed.

Review article: Description and management of fatigue in inflammatory bowel disease.

BACKGROUND: Fatigue is a common and leading concern for patients with inflammatory bowel disease (IBD). It is managed inadequately in IBD, and there is little evidence to support interventions. AIM: To examine patients' experience of and factors contributing to IBD-fatigue, and to appraise its management by patients and healthcare professionals. METHODS: Seven electronic databases were searched. Subject headings and free-text searching were used, with no time limit set. Reference lists of retrieved papers were searched manually. RESULTS: Twenty-eight papers were reviewed. Researchers used terms including 'fatigue', 'low energy', 'tiredness', 'decline in vitality and vigour' and 'reduced energy and vitality'. Different definitions were used to conceptualise fatigue. None of the reviewed studies asked patients to describe the experience of fatigue in their own words. Numerous physical, psychological and situational factors associated with fatigue were identified. Three small randomised control trials reported a favourable effect of infliximab and adalimumab on fatigue. One intervention study reported benefit from a stress management programme and one from solution-focused therapy. CONCLUSIONS: Inconsistent use of terminology, lack of data from patients' perspective on inflammatory bowel disease-fatigue and lack of evidence to support its management contribute to fatigue being largely ignored or overlooked by healthcare professionals. Future research should explore the experience of IBD-fatigue from the individual patient perspective. Further studies are required to fully explore the factors associated with fatigue and to develop patient-centred interventions to reduce fatigue.