Using patients' own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer.

BACKGROUND: One reason for the often late diagnosis of lung cancer (LC) may be that potentially-indicative sensations and symptoms are often diffuse, and may not be considered serious or urgent, making their interpretation complicated. However, with only a few exceptions, efforts to use people's own in-depth knowledge about prodromal bodily experiences has been a missing link in efforts to facilitate early LC diagnosis. In this study, we describe and discuss facilitators and challenges in our process of developing and initial testing an interactive, self-completion e-questionnaire based on patient descriptions of experienced prodromal sensations and symptoms, to support early identification of lung cancer (LC). METHODS: E-questionnaire items were derived from in-depth, detailed explorative interviews with individuals undergoing investigation for suspected LC. The descriptors of sensations/symptoms and the background items obtained were the basis for developing an interactive, individualized instrument, PEX-LC, which was refined for usability through think-aloud and other interviews with patients, members of the public, and clinical staff. RESULTS: Major challenges in the process of developing PEX-LC related to collaboration among many actors, and design/user interface problems including technical issues. Most problems identified through the think-aloud interviews related to design/user interface problems and technical issues rather than content, for example we re-ordered questions to be in line with patients' chronological, rather than retrospective, descriptions of their experiences. PEX-LC was developed into a final e-questionnaire on a touch-screen smart tablet with one background module covering sociodemographic characteristics, 10 interactive, individualized modules covering early sensations and symptoms, and a 12th assessing current symptoms. CONCLUSIONS: Close collaboration with patients throughout the process was intrinsic for developing PEX-LC. Similarly, we recognized the extent to which clinicians and technical experts were also important in this process. Similar endeavors should assure all necessary competence is included in the core research team, to facilitate timely progress. Our experiences developing PEX-LC combined with new empirical research suggest that this individualized, interactive e-questionnaire, developed through systematizing patients' own formulations of their prodromal symptom experiences, is both feasible for use and has potential value in the intended group.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.

Efficacy of mistletoe extract as a complement to standard treatment in advanced pancreatic cancer: study protocol for a multicentre, parallel group, double-blind, randomised, placebo-controlled clinical trial (MISTRAL).

BACKGROUND: Most pancreatic cancer patients present with advanced stage at diagnosis with extremely short expected survival and few treatment options. A multimodal palliative approach is necessary for symptom relief and optimisation of health-related quality of life. In a recent open-label trial of mistletoe extract for advanced pancreatic cancer patients not eligible for chemotherapy, promising results on improved overall survival and better health-related quality of life were reported. The objective of the present study is to assess the value of mistletoe extract as a complement to standard treatment (palliative chemotherapy or best supportive care) in advanced pancreatic cancer patients with regard to overall survival and health-related quality of life. METHODS: The trial is prospective, randomised, double-blind, multicentre, parallel group and placebo-controlled. In total, 290 participants are randomly assigned to placebo or mistletoe extract given subcutaneously in increasing dosage from 0.01 to 20 mg three times per week for 9 months. Stratification is performed for site and palliative chemotherapy. Main inclusion criteria are advanced pancreatic cancer and Eastern Cooperative Oncology Group performance status 0 to 2; main exclusion criteria are life expectancy less than 4 weeks and neuroendocrine tumour of the pancreas. Two ancillary studies on sub-sets of participants are nested in the trial: a biomarker study collecting blood samples and a cross-sectional qualitative study with semi-structured face-to-face interviews. DISCUSSION: To our knowledge, this is the first placebo-controlled randomised trial assessing the impact of mistletoe extract as a complement to standard treatment on overall survival and health-related quality of life in patients with advanced pancreatic cancer. The presented trial with its two nested ancillary studies exploring biomarkers and patient experiences is expected to give new insights into the treatment of advanced pancreatic cancer. TRIAL REGISTRATION: EU Clinical Trial Register, EudraCT Number 2014-004552-64 . Registered on 19 January 2016. ClinicalTrials.gov NCT02948309 . Registered on 28 October 2016.

Early symptoms and sensations as predictors of lung cancer: a machine learning multivariate model.

The aim of this study was to identify a combination of early predictive symptoms/sensations attributable to primary lung cancer (LC). An interactive e-questionnaire comprised of pre-diagnostic descriptors of first symptoms/sensations was administered to patients referred for suspected LC. Respondents were included in the present analysis only if they later received a primary LC diagnosis or had no cancer; and inclusion of each descriptor required ≥4 observations. Fully-completed data from 506/670 individuals later diagnosed with primary LC (n = 311) or no cancer (n = 195) were modelled with orthogonal projections to latent structures (OPLS). After analysing 145/285 descriptors, meeting inclusion criteria, through randomised seven-fold cross-validation (six-fold training set: n = 433; test set: n = 73), 63 provided best LC prediction. The most-significant LC-positive descriptors included a cough that varied over the day, back pain/aches/discomfort, early satiety, appetite loss, and having less strength. Upon combining the descriptors with the background variables current smoking, a cold/flu or pneumonia within the past two years, female sex, older age, a history of COPD (positive LC-association); antibiotics within the past two years, and a history of pneumonia (negative LC-association); the resulting 70-variable model had accurate cross-validated test set performance: area under the ROC curve = 0.767 (descriptors only: 0.736/background predictors only: 0.652), sensitivity = 84.8% (73.9/76.1%, respectively), specificity = 55.6% (66.7/51.9%, respectively). In conclusion, accurate prediction of LC was found through 63 early symptoms/sensations and seven background factors. Further research and precision in this model may lead to a tool for referral and LC diagnostic decision-making.

It is important that the process goes quickly, isn't it?" A qualitative multi-country study of colorectal or lung cancer patients' narratives of the timeliness of diagnosis and quality of care.

PURPOSE: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden. METHOD: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach. RESULTS: Participants' accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow. CONCLUSIONS: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.

Dealing with taste and smell alterations-A qualitative interview study of people treated for lung cancer.

Taste and smell alterations have been recognized as common symptoms in relation to various cancers. However, previous research suggests that patients do not receive sufficient support in managing taste and smell alterations. Therefore, the objective of this study is to investigate how persons with experience from lung cancer-related taste and smell alterations reason about resources and strategies offered and used to manage these symptoms. Data from semi-structured individual interviews with 13 women and four men were analyzed with qualitative content analysis. We used Kleinman's now classic medical anthropological model of local health care systems, consisting of the personal, professional, and folk sector, to interpret and understand how people respond to sickness experiences in their daily lives. By presenting the findings using this model, we demonstrate that most strategies for dealing with taste and smell alterations were undertaken in the personal sector, i.e. in participants' daily lives, on an individual level and in interaction with family, social networks and communities. Taste and smell alterations implied two overarching challenges: 1) adjusting to no longer being able to trust information provided by one's own senses of taste and/or smell, and 2) coming to terms with taste and smell alterations as a part of having lung cancer. Health care professionals' involvement was described as limited, but appeared to fulfil most participants' expectations. However, through provision of normalizing information, practical advice, and to some extent, emotional support, health care professionals had potential to influence strategies and resources used for dealing with taste and smell alterations. With this study, we further the understanding of how people deal with lung cancer-related taste and smell alterations and discuss the role of health care professionals for this process.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes. RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

A longitudinal study of changing characteristics of self-reported taste and smell alterations in patients treated for lung cancer.

PURPOSE: Taste and smell alterations (TSAs) are common symptoms in patients with cancer that may interfere with nutritional intake and quality of life. In this study, we explore and describe how characteristics of self-reported TSAs change in individuals with lung cancer over time using a multiple case study approach to present longitudinal data from individuals. METHODS: Patients under investigation for lung cancer were recruited from one university hospital in Sweden. The 52 patients providing data eligible for the analyses presented here were those treated for primary lung cancer with three measurement time-points, of which one was prior to treatment and two after treatment start. Four self-report instruments were used for data collection. These included the Taste and Smell Survey, used to characterize TSAs for each individual at the three time-points and instruments measuring nutritional status, symptom burden and well-being. Three patient cases are described in detail to illustrate variation in individual experiences of TSAs. RESULTS: The characteristics of the TSAs experienced changed over time for many of the individuals in this study, including those undergoing surgery or stereotactic radiotherapy. The case descriptions show how the individual experiences of TSAs and the impact on daily life of these symptoms not only depend on TSA characteristics, but may be influenced by contextual factors, e.g. other symptoms and life situation. CONCLUSIONS: Our results suggest that healthcare professionals need to consider the variation in characteristics of TSAs among and within patients over time, and be attentive to individual experiences of TSAs.

Characteristics of taste and smell alterations reported by patients after starting treatment for lung cancer.

PURPOSE: Taste and smell alterations (TSAs) in patients with lung cancer are poorly understood. This study investigates characteristics of TSAs when most severe, reported by patients after starting treatment for lung cancer. METHODS: Data was collected regarding TSAs, symptoms, food intake and nutritional status through structured interviews using the Taste and Smell Survey, the Patient-Generated Subjective Global Assessment and 3-day food diaries. This data derives from a longitudinal project and the interview with each patient when TSAs were most severe was purposefully selected for analysis. RESULTS: Sixty-one of the 89 patients reported TSAs, and the TSAs group were on average younger and more frequently smokers. Thirty-one patients reported symptoms impacting negatively on food intake, with 87 % in the TSAs group and 13 % in the no-TSAs group. Most commonly reported were loss of appetite, nausea and early satiety. Gender differences were seen with more women reporting stronger sensation(s) and more men reporting weaker sensation(s) and other changes. TSAs were described as affecting enjoyment of food and eating. A trend was seen where energy intakes declined with increasing TSAs. Energy intakes in the total study population were below recommended. CONCLUSION: TSAs varied in characteristics and interacted with other symptoms. Gender differences may highlight a need to investigate approaches for identification and management of TSAs in men and women. Patients reported TSAs impacting on food enjoyment, and the hypothesis that patients with higher TSS scores have lower nutritional intakes should be followed up with a larger study in the lung cancer population.

Self-reported taste and smell alterations in patients under investigation for lung cancer.

UNLABELLED: This study of patients under investigation for lung cancer (LC) aims to: 1) examine the prevalence of self-reported taste and smell alterations (TSAs) and their relationships with demographic and clinical characteristics; and 2) explore nutritional importance of TSAs by examining their associations with patient-reported weight loss, symptoms interfering with food intake, and changes in food intake. METHODS: Patients were recruited consecutively during investigation for LC from one university hospital in Sweden. Patient-reported information on TSAs, demographics, six-month weight history, symptoms interfering with food intake, and changes in food intake was obtained. Relationships between TSAs and other variables were examined using two-tailed significance tests. In addition, putative explanatory factors for weight loss were explored in those patients diagnosed with LC, since a relationship between TSAs and weight loss was found in this group. RESULTS: The final sample consisted of 215 patients, of which 117 were diagnosed with primary LC within four months of study inclusion and 98 did not receive a cancer diagnosis. The 38% prevalence of TSAs was identical in both groups, and were generally reported as mild and not interfering with food intake. However, a statistically significant relationship between TSAs and weight loss was found among patients with LC, with a median weight change of - 5.5% and a higher frequency of weight loss ≥ 10%. Patients with LC and weight loss ≥ 10%, had higher frequency of reporting TSAs, of decreased food intake and of ≥ 1 symptom interfering with food intake compared with those with less weight loss. CONCLUSION: TSAs, although relatively mild, were present in 38% of patients with and without LC. Relationships between TSAs and weight loss were found among patients with LC, but not fully explained by decreased food intake. This highlights the complexity of cancer-related weight loss.

Reflections on the process of translation and cultural adaptation of an instrument to investigate taste and smell changes in adults with cancer.

Taste and smell changes are common and distressing symptoms in patients with cancer, which may contribute to decreased nutritional intake leading to malnutrition and reduced quality of life. Evidence-based knowledge available to healthcare staff regarding dietary counselling of patients with taste and smell changes is lacking. To be able to develop advice to patients, these symptoms need to be characterised and assessed. The Taste and Smell Survey (TSS) is a 16-item questionnaire in English, which has been used in Canada to investigate self-perceived changes in taste and smell reported by patients with cancer. As no equivalent instrument exists in Swedish, we therefore translated the TSS. This article describes and discusses experiences of using a 5-step process for translation and cultural adaptation of the TSS. Each of the five steps was found to elicit different, essential information contributing to the enhancement of the translation and building further upon refinements of the previous steps. Using a structured, multistep approach to translation and cultural adaptation, we have produced a robust instrument to investigate taste and smell changes specifically adapted for use in the Swedish language and culture.

Reframing eating during chemotherapy in cancer patients with chemosensory alterations.

PURPOSE: Our purpose was to describe how eating is reframed among cancer patients experiencing chemosensory alterations. METHODS: Using data collection and analysis strategies from a qualitative design called ethnoscience, we interviewed 12 patients experiencing taste and smell alterations during chemotherapy. We asked participants to provide a description of a meal and the process by which they decide what and how to eat. Each person was interviewed twice. We compared participants' descriptions of eating, and used this comparison to identify some core beliefs about eating. Participants also completed measures of dietary intake, symptom burden and quality of life. RESULTS: Based on the interviews, we identified specific constraints to eating, beliefs about the value of eating, and behaviours participants used to work around the constraints to eat during chemotherapy. Chemosensory complaints and other symptoms (i.e. pain, anorexia, tiredness), personal experiences and food preferences were the main constraints. Core beliefs about the value of eating included its social benefits, benefits of eating for health per se, and benefits related to preparing for the next chemotherapy cycle. These beliefs reframed the purpose of eating and were used by participants to develop specific strategies to work around the constraints to eating. CONCLUSION: To date, interventions to promote eating among cancer patients have focused extensively on symptom management and on recommendations for macro/micronutrient intake. This study underscores the importance of understanding beliefs about eating. These beliefs may help clinicians develop patient-centered nutritional interventions.

Taste and smell changes in patients receiving cancer chemotherapy: distress, impact on daily life, and self-care strategies.

Few studies have described how patients receiving chemotherapy experience taste/smell changes (TSCs). Food and meal situations have important meaning beyond nutrition, so these common symptoms may affect daily lives. This study aims to investigate distress and impact on daily life from TSCs in patients receiving cancer chemotherapy, analyze reported levels of distress and impact on daily life from TSCs with regard to sociodemographic and clinical factors, and explore patients' reports of self-care strategies and communication with staff. The 340 patients reporting TSCs on a multicenter survey (n = 518) were grouped into subsets by level of TSC-related distress and impact on daily life, which served as the basis for statistical comparison. Written comments were analyzed inductively using content analysis. Nearly one-third of participating patients reported both high levels of distress and impact on daily life (high distress and high impact on daily life [HDHI]) from TSCs. The HDHI subset reported other symptoms more often than others did (P = .01) and also more often responded to open questions about distress, impact, and self-care strategies (P = .01). Taste/smell changes were not always reported to staff, even in the HDHI subset. The specific aspects of TSCs resulting in distress and impact on daily life varied greatly, affecting both psychological and somatic aspects, with little consensus and great individual differences described in self-care strategies. The variety of distress, impact, and strategies used to alleviate TSCs clarifies the importance of situational meaning.

Olfactory changes among patients receiving chemotherapy.

Taste and smell changes (TSCs) are known side effects of chemotherapy, but smell changes (SCs) in the absence of taste changes are understudied. This study aims to explore SCs occurring without taste changes during chemotherapy, to better understand the characteristics of such changes, and how these experiences affect patients in their daily lives. Data derives from a qualitative interview study and a cross-sectional survey of 518 patients, with all patients receiving out-patient cancer chemotherapy in Sweden. Case studies of three patients with SCs and the 8% of survey participants with SCs only are in focus. All 43 participants with exclusively SCs reported increased sensitivity to one or several odors, with no participants reporting decreased sensitivity. Those reporting SCs significantly more often reported weight gain than those reporting TSCs, with oral problems and appetite loss significantly less common in the SC group. There were no differences in reported nausea between SC and TSC groups, but nausea was more common in the SC group than in those without TSCs. The case study reports were linked to and discussed in relation to possible explanatory models for increased olfactory sensitivity. SCs increase during chemotherapy, were often unpredictable and led to emotional consequences. The participants all reported heightened sensitivity to one or several odors which could not fully be explained by the potential explanatory models of anticipatory nausea and vomiting, pseudohallucinations, or increased chemical sensitivity.

Self-reported taste and smell changes during cancer chemotherapy.

PURPOSE: This study explores the prevalence of self-reported taste and smell changes (TSCs) during chemotherapy and relationships between TSCs and demographic and clinical factors. MATERIALS AND METHODS: Consecutive patients who had received chemotherapy for > or =6 weeks at 11 outpatient chemotherapy units completed a questionnaire developed for this survey. RESULTS: Seventy-five percent of the 518 participants reported TSCs, with TSCs more prevalent among women and younger patients. After adjustment for age and sex, we found that patients reporting TSCs more often reported: previous smell changes, less responsibility for cooking, concurrent medication, higher educational levels, and being on sick leave. Participants reporting oral problems, nausea, appetite loss, and depressed mood more frequently reported TSCs. Diagnosis and type of chemotherapy regimen did not predict TSCs. CONCLUSION: TSCs were found to be common during cancer chemotherapy and were related to sociodemographic rather than clinical factors. TSCs were also found to be closely related to many other side effects of chemotherapy.

Chemosensory changes experienced by patients undergoing cancer chemotherapy: a qualitative interview study.

Few studies explore patients' experiences of smell and taste changes during cytotoxic chemotherapy. Issues, such as how such changes impact daily life, their consequences, and how patients respond to chemotherapy-induced chemosensory changes, have not previously been systematically addressed. The aim of this study was to examine these questions by exploring experiences of chemotherapy-induced chemosensory changes. In this qualitative longitudinal study, semistructured interviews were conducted with 14 women and 7 men with a variety of cancer diagnoses, who were known to have smell and taste changes. The participants were chosen for heterogeneity in regard to factors that might impact on experiences of chemotherapy. Participants were followed monthly until chemosensory changes ceased. There was great individual variation in patterns, intensity and impact of smell and/or taste changes, with changes reported to have ceased in all participants within 3.5 months after treatment ended. While not all participants found reported changes "bothersome," those who did reported predominantly emotional and social consequences. Smell and taste changes were said to be influenced by, or to influence, other symptoms, for example, appetite loss, early satiation, nausea, and oral problems. Although participants said they lacked ways to manage chemosensory changes, coping strategies described included frequent oral hygiene, searching for tolerable food, relying on smell and taste memory, and acceptance of changes. Although chemosensory changes resolved in all participants within several months after completed chemotherapy, the reported variation in experiences of taste and smell changes makes these side effects especially challenging to assess and alleviate.

Complexity in caring for patients with advanced cancer.

BACKGROUND: The gap between nursing research and practice is readily acknowledged in literature, with a variety of strategies suggested for reducing this gap. It is necessary not only to address problems of research implementation in practice, but also to find strategies that strengthen the influence of practitioners on research agendas through more collaborative relationships in order to have an impact on care of patients. A multi-centre research project was therefore initiated by two universities and three health care facilities, aiming to improve quality of care for patients with advanced cancer through a knowledge-exchange programme between nurse researchers, practitioners and students. AIM: The aim of this article is to explore how clinical staff reason about care provision for patients with advanced cancer, through analysis of 20 focus group discussions conducted with staff in three different health care facilities in two Swedish cities. An initial analysis based on grounded theory was complemented with consideration of the interactive process in the focus group discussions, and carried out by a team consisting of senior nurse researchers, clinical experts and nursing instructors. FINDINGS: The findings of the focus group discussions emphasize the complexity of caregiving for patients with advanced cancer. The tension between caregiving ideals and limits imposed by the realities of caregiving in today's health system were striking. Practitioners discussed the organization of care, different constellations of relationships between patients, family members and professionals, and theoretical and experiential knowledge as equally important aspects in dealing with all concrete situations in daily practice. The importance of reflective practice, use of self and ethical reasoning also permeated the focus group discussions. CONCLUSIONS: These findings highlight an integrated need both to influence organizational structures and working relationships, along with increasing knowledge, if sustainable change is to be effected.