Patient and caregiver shared experiences of pulmonary fibrosis (PF): A systematic literature review.

Pulmonary Fibrosis (PF) describes a group of lung diseases characterised by progressive scarring (fibrosis). Symptoms worsen over time and include breathlessness, tiredness, and cough, giving rise to psychological distress. Significant morbidity accompanies PF, so ensuring patients' care needs are well defined and provided for, represents an important treatment strategy. The purpose of this systematic review was to synthesise what is currently known about the psychosocial morbidity, illness experience and needs of people with pulmonary fibrosis and their informal caregivers. Eight databases (MEDLINE, EMBASE, PUBMED, Cochrane database of Systematic reviews (CDSR), Web of Science Social Sciences Citation Index, PsycINFO, PsycARTICLES and CINAHL) were used to identify studies exploring the supportive needs of adults with PF and/or their caregivers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. 53 studies were included, the majority using qualitative methodology (79 %, 42/53), 6 as part of mixed methodological studies. Supportive care needs were mapped to eight domains using an a priori framework analysis. Findings highlight a lack of psychological support throughout the course of the illness, misconceptions about and barriers to, the provision of palliative care despite its potential positive impacts. Patients and caregivers express a desire for greater disease specific education and information provision throughout the illness. Trials of complex interventions are needed to address the unique set of challenges for patients and carers living with PF.

Cancer-related pain in head and neck cancer survivors: longitudinal findings from the Head and Neck 5000 clinical cohort.

PURPOSE: Reports suggest pain is common in head and neck cancer (HNC). However, past studies are limited by small sample sizes and design and measurement heterogeneity. Using data from the Head and Neck 5000 longitudinal cohort, we investigated pain over a year post-diagnosis. We assessed: temporal trends; compared pain across HNC treatments, stages, sites and by HPV status; and identified subgroups of patients at increased risk of pain. METHODS: Sociodemographic and clinical data and patient-reported pain (measured by EORTC QLQ-C30 and QLQ-H&N35) were collected at baseline (pre-treatment), 4- and 12- months. Using mixed effects multivariable regression, we investigated time trends and identified associations between (i) clinically-important general pain and (ii) HN-specific pain and clinical, socio-economic, and demographic variables. RESULTS: 2,870 patients were included. At baseline, 40.9% had clinically-important general pain, rising to 47.6% at 4-months and declining to 35.5% at 12-months. HN-specific pain followed a similar pattern (mean score (sd): baseline 26.4 (25.10); 4-months. 28.9 (26.55); 12-months, 17.2 (19.83)). Across time, general and HN-specific pain levels were increased in: younger patients, smokers, and those with depression and comorbidities at baseline, and more advanced, oral cavity and HPV negative cancers. CONCLUSIONS: There is high prevalence of general pain in people living with HNC. We identified subgroups more often reporting general and HN-specific pain towards whom interventions could be targeted. IMPLICATIONS FOR CANCER SURVIVORS: Greater emphasis should be placed on identifying and treating pain in HNC. Systematic pain screening could help identify those who could benefit from an early pain management plan.

Cancer-Related Fatigue in Head and Neck Cancer Survivors: Longitudinal Findings from the Head and Neck 5000 Prospective Clinical Cohort.

Cancer-related fatigue (CRF) is a common side-effect of cancer and its treatments. For head and neck cancer (HNC), CRF may exacerbate the symptom burden and poor quality-of-life. Using data from the Head and Neck 5000 prospective clinical cohort, we investigated clinically important CRF over a year post-diagnosis, assessing temporal trends, CRF by HNC site and treatment received, and subgroups at higher risk of CRF. Recruitment was undertaken in 2011-2014. Socio-demographic and clinical data, and patient-reported CRF (EORTC QLQ-C30 fatigue subscale score ≥39 of a possible 100) were collected at baseline (pre-treatment) and 4- and 12- months post-baseline. Mixed-effects logistic multivariable regression was used to investigate time trends, compare cancer sites and treatment groups, and identify associations between clinical, socio-demographic and lifestyle variables and CRF. At baseline, 27.8% of 2847 patients scored in the range for clinically important CRF. This was 44.7% at 4 months and 29.6% at 12 months. In the multivariable model, after adjusting for time-point, the odds of having CRF over 12 months were significantly increased in females and current smokers; those with stage 3/4 disease, comorbidities and multimodal treatment; and those who had depression at baseline. The high prevalence of clinically important CRF indicates the need for additional interventions and supports for affected HNC patients. These findings also identified patient subgroups towards whom such interventions could be targeted.

The effectiveness of nurse-led care in supporting self-management in patients with cancer: A systematic review.

AIMS AND OBJECTIVES: To determine the impact of nurse-led follow-up care supporting self-management of people who have had or have cancer. BACKGROUND: Cancer care is evolving towards enabling people to self-manage the impact of cancer, treatment and overall care on their quality of life (QoL), self-efficacy and distress. DESIGN: A systematic review following Joanna Briggs Institution (JBI) guidance and reported in accordance with the PRISMA statement was undertaken. METHODS: Four databases were searched, OVID Medline, CINAHL, PsychINFO and Embase. Quantitative randomised control trials with people who have or have had cancer accessing nurse-led care or nurse-led intervention, undertaken within secondary care were included. Narrative synthesis was undertaken due to heterogeneity of measures used and time points of assessment. RESULTS: Seven papers were included in the final review, all meeting moderate to high-quality appraisal. Only one study found an impact of nurse-led care on all three factors under investigation, with a further two studies finding an effect on distress. The remaining studies did not find an impact of the intervention. CONCLUSION: Clinical Nurse Specialists are well placed to provide follow-up care for people with cancer, but in relation to QoL, self-efficacy and distress, there is limited evidence of effectiveness of nurse-led interventions. PUBLIC OR PATIENT CONTRIBUTION: This systematic review did not have any public or patient contribution. RELEVANCE TO CLINICAL PRACTICE: Cancer care is moving to a chronic care, self-management model. Clinical nurse specialists are well placed to innovate interventions that assist people with cancer to self-manage.

A survey of quality-of-life tools used in the routine care of patients with multiple myeloma.

BACKGROUND: New treatment options have significantly improved the life expectancy of myeloma patients such that their cause of death is increasingly likely to be from something other than myeloma. Furthermore, the adverse effects of short- or long-term treatments as well as the disease are impacting on quality of life (QoL) for longer periods of time. Understanding people's QoL and what is important to them, is part of providing holistic care. Although QoL data has been collected for many years in myeloma studies, they have not been used to inform patient outcomes. There is growing evidence that supports the assessment of 'fitness' and consideration of QoL as part of routine myeloma care. A national survey was carried out to discover which QoL tools are currently being used in the routine care of myeloma patients, by whom and at which time point. METHODS: An online survey using SurveyMonkey was adopted for flexibility and accessibility. The link to the survey was circulated via Bloodwise, Myeloma UK and Cancer Research UK contact lists. Paper questionnaires were circulated at the UK Myeloma Forum. RESULTS: Data about practices in 26 centres were collected. This included sites across England and Wales. Three out of 26 centres collect QoL data as part of standard care. QoL tools used include EORTC QLQ-My20/24, MyPOS, FACT-BMT and Quality of Life Index. Questionnaires were completed by patients before, during or after a clinic appointment. Clinical nurse specialists calculate the scores and create a care plan. CONCLUSION: Despite growing evidence to support an holistic approach to management of myeloma patients, there is a lack of evidence to confirm that health-related QoL is being addressed in standard care. This is an area that needs further research.

Evaluating the effectiveness of abbreviated breast MRI (abMRI) interpretation training for mammogram readers: a multi-centre study assessing diagnostic performance, using an enriched dataset.

BACKGROUND: Abbreviated breast MRI (abMRI) is being introduced in breast screening trials and clinical practice, particularly for women with dense breasts. Upscaling abMRI provision requires the workforce of mammogram readers to learn to effectively interpret abMRI. The purpose of this study was to examine the diagnostic accuracy of mammogram readers to interpret abMRI after a single day of standardised small-group training and to compare diagnostic performance of mammogram readers experienced in full-protocol breast MRI (fpMRI) interpretation (Group 1) with that of those without fpMRI interpretation experience (Group 2). METHODS: Mammogram readers were recruited from six NHS Breast Screening Programme sites. Small-group hands-on workstation training was provided, with subsequent prospective, independent, blinded interpretation of an enriched dataset with known outcome. A simplified form of abMRI (first post-contrast subtracted images (FAST MRI), displayed as maximum-intensity projection (MIP) and subtracted slice stack) was used. Per-breast and per-lesion diagnostic accuracy analysis was undertaken, with comparison across groups, and double-reading simulation of a consecutive screening subset. RESULTS: 37 readers (Group 1: 17, Group 2: 20) completed the reading task of 125 scans (250 breasts) (total = 9250 reads). Overall sensitivity was 86% (95% confidence interval (CI) 84-87%; 1776/2072) and specificity 86% (95%CI 85-86%; 6140/7178). Group 1 showed significantly higher sensitivity (843/952; 89%; 95%CI 86-91%) and higher specificity (2957/3298; 90%; 95%CI 89-91%) than Group 2 (sensitivity = 83%; 95%CI 81-85% (933/1120) p < 0.0001; specificity = 82%; 95%CI 81-83% (3183/3880) p < 0.0001). Inter-reader agreement was higher for Group 1 (kappa = 0.73; 95%CI 0.68-0.79) than for Group 2 (kappa = 0.51; 95%CI 0.45-0.56). Specificity improved for Group 2, from the first 55 cases (81%) to the remaining 70 (83%) (p = 0.02) but not for Group 1 (90-89% p = 0.44), whereas sensitivity remained consistent for both Group 1 (88-89%) and Group 2 (83-84%). CONCLUSIONS: Single-day abMRI interpretation training for mammogram readers achieved an overall diagnostic performance within benchmarks published for fpMRI but was insufficient for diagnostic accuracy of mammogram readers new to breast MRI to match that of experienced fpMRI readers. Novice MRI reader performance improved during the reading task, suggesting that additional training could further narrow this performance gap.

Associations between markers of social functioning and depression and quality of life in survivors of head and neck cancer: Findings from the Head and Neck Cancer 5000 study.

OBJECTIVE: To investigate associations between markers of social functioning (trouble with social eating and social contact), depression and health-related quality of life (QOL) among head and neck cancer survivors. METHODS: This cross-sectional analysis included individuals with oral cavity, oropharynx, larynx, salivary gland and thyroid cancers from Head and Neck 5000 alive at 12 months. Trouble with social eating and social contact were measured using items from EORTC QLQ-H&N35 and QOL using EORTC QLQ-C30; responses were converted into a score of 0-100, with a higher score equalling more trouble or better QOL. A HADS subscale score of ≥8 was considered significant depression. Associations between tertiles of trouble with social eating and social contact and depression and QoL were assessed using multivariable logistic and linear regression (with robust errors), respectively. RESULTS: Of 2561 survivors, 23% reported significant depression. The median QOL score was 75.0 (interquartile range 58.3-83.3). For trouble with social eating, after confounder adjustment, those in the intermediate and highest tertiles had higher odds of depression (intermediate: OR = 4.5, 95% CI 3.19-6.45; high: OR = 21.8, 15.17-31.18) and lower QOL (intermediate:ß = -8.7, 95% CI -10.35 to -7.14; high: ß = -24.8, -26.91 to -22.77). Results were similar for trouble with social contact. CONCLUSION: We found strong clinically important associations between markers of social functioning and depression and QOL. More effective interventions addressing social eating and contact are required. These may help survivors regain their independence, reduce levels of isolation and loneliness, and depression, and improve QOL outcomes generally.

Trends in, and predictors of, swallowing and social eating outcomes in head and neck cancer survivors: A longitudinal analysis of head and neck 5000.

OBJECTIVE: To investigate the recovery trajectory and predictors of outcome for swallowing difficulties following head and neck cancer treatment in a large prospective cohort. MATERIALS AND METHODS: Data from 5404 participants of the Head and Neck 5000 study were collected from 2011 to 2014. Patient-reported swallowing was measured using the EORTC HN35, recorded at baseline (pre-treatment) and 4 and 12 months post-baseline. Mixed-effects linear multivariable regression was used to investigate time trends, compare cancer sites, and identify associations between clinical, socio-demographic and lifestyle variables. RESULTS: 2458 participants with non-recurrent oral (29%) oropharyngeal (46%) and laryngeal (25%) cancer were included in the analysis. There was a clinically significant deterioration in scores between baseline and four months for swallowing (11.7 points; 95% CI 10.7-12.8) and trouble with social eating (17.9 points; 95% CI 16.7-19.2), but minimal difference between baseline and 12 months. Predictors of better swallowing and social eating were participants with larynx cancer, early-stage disease, treatment type, age, gender, co-morbidity, socio-economic status, smoking behaviour and cohabitation. CONCLUSION: Swallowing problems persist up to a year after head and neck cancer treatment. These findings identify disease and demographic characteristics for particularly vulnerable groups, supporting the need for holistic interventions to help improve swallowing outcomes. People diagnosed with head and neck cancer at risk of severe eating and drinking problems following treatment can be identified earlier in the pathway, receive more accurate information about early and late post-treatment side-effects, which can inform shared decision-making discussions.

The role of body image in treatment decision-making and post-treatment regret following prostatectomy.

Three main treatments are offered to men with localised prostate cancer: active monitoring, radiotherapy and prostatectomy. The aim of this research was to explore the role of body image in treatment decision-making and post-treatment regret following prostatectomy for localised prostate cancer. Data were collected via nine semi-structured interviews. Interviews underwent thematic analysis and four themes emerged: need to prolong life, loss of function and self, post-surgery effects on body image and confidence, and coping strategies. Participants revealed that loss of erectile function following surgery resulted in reduced self-confidence, and changes in their perception of their body.

Can mammogram readers swiftly and effectively learn to interpret first post-contrast acquisition subtracted (FAST) MRI, a type of abbreviated breast MRI?: a single centre data-interpretation study.

OBJECTIVES: To assess whether NHS breast screening programme (NHSBSP) mammogram readers could effectively interpret first post-contrast acquisition subtracted (FAST) MRI, for intended use in screening for breast cancer. METHODS: Eight NHSBSP mammogram readers from a single centre (four who also read breast MRI (Group 1) and four who do not (Group 2)) were given structured FAST MRI reader training (median 4 h: 32 min). They then prospectively interpreted 125 FAST MRIs (250 breasts: 194 normal and 56 cancer) comprising a consecutive series of screening MRIs enriched with additional cancer cases from 2015, providing 2000 interpretations. Readers were blinded to other readers' opinions and to clinical information. Categorisation followed the NHSBSP MRI reporting categorisation, with categories 4 and 5 considered indicative of cancer. Diagnostic accuracy (reference standard: histology or 2 years' follow-up) and agreement between readers were determined. RESULTS: The accuracy achieved by Group 2 (847/1000 (85%; 95% confidence interval (CI) 82-87%)) was 5% less than that of Group 1 (898/1000 (90%; 95% CI 88-92)). Good inter-reader agreement was seen between both Group 1 readers (κ = 0.66; 95% CI 0.61-0.71) and Group 2 readers (κ = 0.63; 95% CI 0.58-0.68). The median time taken to interpret each FAST MRI was Group 1: 34 s (range 3-351) and Group 2: 77 s (range 11-321). CONCLUSION: Brief structured training enabled multiprofessional mammogram readers to achieve similar accuracy at FAST MRI interpretation to consultant radiologists experienced at breast MRI interpretation. ADVANCES IN KNOWLEDGE: FAST MRI could be feasible from a training-the-workforce perspective for screening within NHSBSP.

The use of 'Think-Out-Loud' methodology in the development of teaching materials for abbreviated breast Magnetic Resonance Imaging scan (FAST MRI) interpretation, and a comparison of the learning experience of two reader cohorts.

AIM: FAST MRI is an abbreviated breast MRI technique, proposed as a screening tool for breast cancer. This study aims to explore how 'Think-Out-Loud' (TOL) methodology can effectively develop and shape training to interpret standard breast MRI on readers' learning experience. MATERIALS AND METHODS: TOL methodology asks people to speak their thoughts while performing a task; to say whatever they are looking at, thinking, doing, and feeling at each moment. It helps determine expectations and identify aspects of confusion. This methodology was adopted with two groups of image readers to develop training materials for FAST MRI interpretation.Eight image readers (readers); 4 NHS Breast Screening Programme (NHSBSP) breast MRI and mammogram readers (Group 1) and 4 NHSBSP mammogram readers who do not read breast MRI (Group 2) were audio and video recorded during training. Content analysis was undertaken. RESULTS: TOL was well received by the readers and allowed iterative development and refinement of a training package. Challenges relating to introducing new concepts and managing uncertainty were identified through the analysis of the TOL audio data. Additionally, Group 2 asked for more clarification than Group 1, of both the teaching materials and how to use the image-manipulation software. CONCLUSION: TOL methodology allowed effective training of both groups of readers. The iterative nature of individual training ensured production of user-friendly materials including frequently-asked-questions sheets. It allowed for each person to feel that their views were fully listened to and incorporated into the training package, allowing for training materials with high face validity.

Drawing: A novel approach to understanding appearance change in people following treatment for head and neck cancer.

OBJECTIVES: Appearance is a factor within head and neck cancer health-related quality of life measures; however, the issue of self-perceived appearance has received scant attention. Self-portraiture may provide insight into the patient's perspective, allowing people to provide viewpoints that are not easily accessible. This research investigates the methodology of drawing and responses from patient-completed questionnaires in a head and neck cancer population. METHODS: A sample of 30 people at least 3 months post-treatment for head and neck cancer were recruited. Participants completed the Derriford Appearance Scale, University of Washington Quality of Life scale, and two drawings: (1) how they recall themselves pre-treatment and (2) how they see themselves post-treatment. They were asked to discuss the methodology and their experience of it. RESULTS: Correlations with Derriford Appearance Scale, University of Washington Quality of Life scale, and size drawings failed to find relationships between these variables. Post-treatment drawings were significantly smaller than pre-treatment. Qualitative analysis of the drawings found differences between the images. Participants related how drawing gave an opportunity to voice concerns that questionnaires and clinic appointments did not. CONCLUSION: Drawing can elicit distinctly different information about a person following treatment for head and neck cancer than that provided by health-related quality of life measures. Further research would clarify if clinical opinion matches patients' drawing.

Existence of benefit finding and posttraumatic growth in people treated for head and neck cancer: a systematic review.

Background. The impact of head and neck cancer (HNC) in long-term survivors differs widely among individuals, and a significant number of them suffer from the negative effects of disease, whereas others report significant positive effect. This systematic review investigated the evidence the implications of treatment for HNC and subsequent development of Benefit Finding (BF) or Posttraumatic Growth (PTG). Purpose. To understand how differing medical, psychological and social characteristics of HNC may lead to BF/PTG and subsequently inform post-treatment interventions to encourage positive outcomes. Method. In February 2012, five databases including Pubmed, and Psych Info, were searched, for peer-reviewed English-language publications. Search strings included key words pertaining to HNC, BF, and PTG. One thousand three hundred and sixty three publications were identified, reviewed, and reduced following Cochrane guidelines and inclusion/exclusion criteria specified by a group of maxillofacial consultants and psychologists. Publications were then quality assessed using the CASP Cohort Critical Appraisal tool. Findings. Five manuscripts met the search and selection criteria, and were sourced for review. All studies were identified as being level IIb evidence which is a medium level of quality. The majority of studies investigated benefit finding (80%) and were split between recruiting participant via cancer clinics and postal survey. They focused on the medical, psychological and social characteristics of the patient following completion of treatment for HNC. Conclusion. Demographic factors across the papers showed similar patterns of relationships across BF and PTG; that higher education/qualification and cohabitation/marriage are associated with increased BF/PTG. Similarly, overlap with disease characteristics and psychosocial factors where hope and optimism were both positively correlated with increased reported BF/PTG.

Effects of hyperbaric oxygen therapy on quality of life in maxillofacial patients with type III osteoradionecrosis.

PURPOSE: Over a 4-year period, 18 patients with type III osteoradionecrosis that developed an average of 55 months after radiotherapy treatment for head and neck cancers were referred for hyperbaric oxygen therapy (HBO(2)). MATERIALS AND METHODS: Participants completed a questionnaire battery before and after HBO(2), including the European Organization for Research and Treatment of Cancer (EORTC) Core 30, the EORTC Head and Neck 35, and the Medical Outcomes Short Form 36. RESULTS: The EORTC Core 30 questionnaire indicated significant improvements in "emotional functioning" and "insomnia" (P ≤ .01 and P ≤ .01). An improvement also was found in the "social eating" (P ≤ .01) and "teeth" (P ≤ .01) domains of the EORTC Head and Neck 35 questionnaire. These beneficial outcomes might be explained in part by the social environment of being in a specific treatment group with similar patients. However, the Medical Outcomes Short Form 36 indicated a significant decrease in "social functioning" (P ≤ .01). The patient group in this study did not undergo any surgical intervention between the 2 time points and no other interventions could be connected with the improvements, particularly in relation to "teeth." In addition, clinical follow-up confirmed the stabilization of the patients' clinical conditions. CONCLUSIONS: The findings of this study support the hypothesis that HBO(2) has positive physiologic and psychological effects on some factors for this patient group.

An unusual presentation of metastatic colon adenocarcinoma in the oral cavity.

Background. A case report of a nonhealing ulcer of the tongue histologically proven to be adenocarcinoma. Method. A 92-year-old man underwent clinical, immunochemistry, and imaging investigation. Results. Tests confirmed a distant metastasis of a primary colorectal carcinoma. Conclusion. Metastasis from colorectal carcinoma to the oral cavity is primarily to bone, but non-healing ulcers of the oral cavity should be considered in differential diagnoses.

Educational impact of pulmonary rehabilitation: Lung Information Needs Questionnaire.

INTRODUCTION: The Lung Information Needs Questionnaire (LINQ) assesses, from the patient's perspective, their need for education. This questionnaire yields a total score and scores in six domains: disease knowledge, medicine, self-management, smoking, exercise and diet. The aim of this study was to assess the sensitivity of the LINQ to change before and after pulmonary rehabilitation (PR). METHOD: PR programmes across the UK recruited 158 patients (male=94; 59%). The participants completed the LINQ and other measures as used by the individual sites pre- and post-PR, including the Shuttle Walking Test, Chronic Respiratory Disease Questionnaire, the Hospital Anxiety and Depression Scale. RESULTS: Data were analysed on 115 patients who completed data collection pre- and post-PR. The LINQ total scores, and subscales scores across all sites improved significantly with large effect sizes, except for the smoking domain as information needs about smoking were well met prior to PR. There were similar patterns of information needs at baseline and after PR in all sites. DISCUSSION: This study shows that the LINQ is a practical tool for detecting areas where patients need education and is sensitive to change after PR. The quality of the education component of PR can be assessed using the LINQ, which could be considered as a routinely collected outcome measure in PR. The LINQ may also be a useful tool for general practitioners to assess their patients' educational needs.