Patients' health literacy is associated with timely diagnosis of cancer-A cross-sectional study in Denmark.

OBJECTIVE: Timely diagnosis of cancer is important for prognosis. Patients' health literacy (HL) may impact differences of diagnostic delays. Thus, we aim to explore the association between HL and diagnostic intervals in cancer. METHODS: Questionnaire data were obtained from patients with cancer diagnosed in 2016 and their general practitioner (n = 3890). The primary care interval (PCI) and the diagnostic interval (DI) were calculated using dates from national registries and questionnaires. A long PCI and DI were defined as ≥75th percentile. HL was assessed using scales from the Health Literacy Questionnaire: engaging with healthcare providers (scale 6:Engagement, n = 3008), navigating in healthcare (scale 7:Navigation, n = 2827) and understanding health information (scale 9:Knowledge, n = 3002). Low HL was defined as a score ≤3. RESULTS: Low HL was reported by 12.2% (Engagement), 27.0% (Navigation) and 9.3% (Knowledge) of the patients and associated with a long PCI after adjustment of socio-economic factors: Engagement (prevalence rate ratio [PRR] 1.27 [95% CI 1.01-1.60]), Navigation (PRR 1.41 [95% CI 1.10-1.80]) and Knowledge (PRR 1.32 [95% CI 1.03-1.68]). No association was found between HL and DI. CONCLUSION: HL may interfere with the diagnostic processes in general practice. Efforts to manage low HL include GPs' awareness of patients' ability to explain and respond to bodily changes and use of corresponding safety-netting strategies.

Alignment between the patient's cancer worry and the GP's cancer suspicion and the association with the interval between first symptom presentation and referral: a cross-sectional study in Denmark.

BACKGROUND: General practitioners (GPs) have a key role in the diagnosis of cancer. It is crucial to identify factors influencing the decision to refer for suspected cancer. The aim of this study was to investigate the alignment between the patient's cancer worry and the GP's suspicion of cancer in the first clinical encounter and the association with the time interval from the first symptom presentation until the first referral to specialist care, i.e. the primary care interval (PCI). METHOD: The study was performed as a cross-sectional study using survey data on patients diagnosed with incident cancer in 2010 or 2016 and their GPs in Denmark. We defined four alignment groups: 1) patient worry and GP suspicion, 2)  GP suspicion only, 3) patient worry only, and 4) none of the two. A long PCI was defined as an interval longer than the 75th percentile. RESULTS: Among the 3333 included patients, both patient worry and GP suspicion was seen in 39.5%, only GP suspicion was seen in 28.2%, only patient worry was seen in 13.6%, and neither patient worry nor GP suspicion was seen in 18.2%. The highest likelihood of long PCI was observed in group 4 (group 4 vs. group 1: PPR 3.99 (95% CI 3.34-4.75)), mostly pronounced for easy-to-diagnose cancer types. CONCLUSION: Misalignment between the patient's worry and the GP's suspicion was common at the first cancer-related encounter. Importance should be given to the patient interview, due to a potential delayed GP referral among patients diagnosed with "easy-to-diagnose" cancer types presenting with unspecific symptoms.

The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany.

BACKGROUND: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are tools for assessing outcomes of and experiences with health care from the patient's perspective. In Germany, PROMs are widely used in research for evaluating patient outcomes and quality of care. However, the application of PREMs is rather scant, especially in oncology. The study aimed to assess the feasibility of patient-centred quality evaluation in oncological care in Germany using the German adaptation of the Danish National Cancer Patient Questionnaire. This questionnaire is a PREM/PROM-tool addressing patients of all cancer sites and covering the entire cancer patient pathway. METHODS: The Danish National Cancer Patient Questionnaire was translated into German via forward-backward translation. Face-validity was tested among three cancer patients in a conventional pre-test. The German adaptation contains 99 questions. A pilot test was carried out among 245 newly diagnosed breast and colorectal cancer patients in the German federal state Schleswig-Holstein. Patients were recruited via clinics participating in the Oncological Care Registry (12 specialised units in seven hospitals) and contacted six to nine months after diagnosis. Response behaviour and response patterns were compared to the Danish study population (n = 1964). RESULTS: The willingness among clinicians to support patient recruitment as well as the response rate of patients to the questionnaire was high (65%). Moreover, response behaviour and response patterns of German and Danish patients were consistent. Despite the generally good response behaviour of patients to the single items, the authors observed that questions assessing the diagnostic process did not fully capture German pathways. Only 19.3% of the German patients stated that their diagnostic process was initiated by a visit to a general practitioner (GP) in contrast to 52% in Denmark. The assessment of patient experiences in the diagnostic phase heavily focuses on experiences in general practice, which does not seem appropriate in the German health care setting. CONCLUSION: The translation was successful, and the feasibility of a future large-scale study within existing structures is given. However, some modifications of questions heavily related to the Danish health care system, especially referring to the diagnostic phase, are necessary.

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross-sectional nationwide questionnaire study.

OBJECTIVE: The negative impact of malignant disease on sexual and relational functioning is well documented among adults but scarcely investigated among adolescents and young adults. This study explored the body image, self-perceived attractiveness, and sexual/romantic experiences of Danes diagnosed with cancer at the age of 15 to 29 years. It also aimed to clarify whether self-perceived needs for counseling were in fact met by health care providers. METHODS: All Danes who had been diagnosed with cancer at the age of 15 to 29 years during the period 2009 to 2013 were included in a cross-sectional nationwide questionnaire study. Eight hundred twenty-two questionnaires were returned, yielding a response rate of 45%. RESULTS: More than half of the respondents (53.8%) reported that cancer had altered their body image negatively, while 44.6% felt that disease had lowered their feeling of being attractive. Nearly one-third (31.3%) and one-fourth (23.6%), respectively, had experienced a negative impact on their desire to have sex or to flirt/date/have a partner. Female responders were more affected than males on most variables, and breast cancer patients were approximately 4 times more at risk for sexual and romantic adversities than patients with melanoma of the skin. Although more than 80% indicated a need to discuss issues of sexuality and intimacy with a health professional, 49.5% and 61.7%, respectively, had talked little or not at all with professionals during hospitalization and follow-up consultations. CONCLUSIONS: Young cancer patients experience sexual and romantic challenges along with a lack of self-perceived attractiveness. Their substantial need for dialogue and counselling should be met in health care settings.

Determinants of patient satisfaction with cancer care delivered by the Danish healthcare system.

BACKGROUND: Patient-reported quality of care, which is often measured by patients' overall rating of care, is gaining more attention within the field of oncology. The aim of this study was to examine factors that determine adult cancer patients' overall rating of prediagnosis care (PDC) and care provided during treatment (CDT). METHODS: Data were collected from 2 recurrent nationwide surveys among adult cancer patients in Denmark in 2010 and 2012. Analyses regarding PDC were based on the 2010 study population (n = 3681), and CDT analyses were based on the 2012 follow-up population (n = 2315). Multivariable logistic regression models were applied. RESULTS: Overall, 55.1% of patients reported excellent PDC and 61.9% reported excellent CDT. The odds of rating PDC and CDT as excellent differed significantly according to sex, age, and cancer diagnosis. Furthermore, the extent of supportive relatives, comorbidity, self-reported health, and region of treatment significantly determined ratings of CDT. Patients who reported negative experiences related to waiting time, information, coordination, and continuity of care during PDC and CDT, respectively, were significantly less likely overall to rate their care as excellent. The final regression models for PDC and CDT explained 38.2% and 30.6%, respectively, of the variance in the overall rating. CONCLUSION: Learning how patient characteristics influence the overall rating of care can enable health care providers to accommodate vulnerable patient groups. Identification of health care aspects that are independently associated with the overall rating of care may enable targeted efforts when planning and prioritizing initiatives aimed at improving the patient-experienced quality of care. Cancer 2017;123:2918-26. © 2017 American Cancer Society.

Cancer patients' preferences of care within hospitals: a systematic literature review.

PURPOSE: Knowledge about cancer patients' preferences in health care is important because it enables care to be patient centered. However, the literature does not provide an overview. The aim of this study was to identify the dimensions of hospital-based cancer care that patients evaluate the most important using Patient-rated importance as a method. DATA SOURCE: PubMed was searched in 2013/2014. STUDY SELECTION: Studies were identified, if they were in accordance with specific search terms and focused on hospital-based cancer care. Totally, 11 studies were found. DATA EXTRACTION: The 11 studies comprised a total of 598 items. Of these, 592 items were categorized into 19 care dimensions. The highest rated quartile of items was identified as care elements patients evaluated to be the most important. Identification of the most important dimensions was done by calculating the percentages of items within each dimension that were within the highest quartile. RESULTS OF DATA SYNTHESIS: The 11 studies varied a lot in regard to aim and patient characteristics. The three most important dimensions were as follows: Rapid diagnosis and treatment; High professional standard; and Information about treatment and side(effects)/consequences. Within four dimensions, Psychosocial support, Physical facilities, Waiting time and Transparency in care, no items were within the highest quartile. CONCLUSION: Patient-rated importance was a useful method in identifying the care patients preferred. Due to a limited number of studies and great diversity within studies evaluated, interpretation of results should be cautious. However, it seems that cancer patients treated in hospitals with a curative intent find treatment-related information, professional standard and short delay of diagnosis and treatment most important.

Effect of an entry-to-care intervention on diabetes distress in individuals with newly diagnosed type 2 diabetes: a study protocol for a cluster-randomized trial.

BACKGROUND: Diabetes distress (DD) affects at least 36% of T2DM patients and is often associated with insufficient support and care. This study examines an intervention that targets DD through enhanced cross-sectoral collaboration and treatment during the first 3 months following diagnosis. The intervention aims to improve care and self-management and to reduce DD. METHODS AND INTERVENTION: The study is designed as a cluster-randomized trial with the intervention focusing on four key elements of diabetes care: effective cross-sectoral communication and information sharing, systematic care, a "one-stop-shop" health screening and start-up conversation at the municipality, and improving patient insights into own care. This study requires 32 clusters (16/arm) to achieve 80% power and a 5% significance cut-off, with 270 patients required. GP recruitment occurred from May to Dec 2022. Patient recruitment is ongoing from May 2022 to Aug 2023. GPs were randomized 1:1 using computer-generated blocks of six. Participating GPs are located in Southern Denmark and are not participating in other trials. Patients must be 18 + years of age, have a T2DM diagnosis, and be fluent in spoken and written Danish. DD is the primary outcome and will be measured at baseline, at four months, and again at a 12-month follow-up. Secondary outcomes include quality of care, self-management, quality of life, and clinical factors. Tertiary outcomes comprise depression, stress, resilience, sleep quality, and social network quality. CONCLUSION: This study is among the first clinical trials exploring the development of DD from diagnosis to 12 months post-diagnosis. Many previous interventions did not directly target DD as the primary outcome. This research provides new insights into DD progression in patients newly diagnosed with T2DM and examines an intervention designed to lower DD in early diabetes stages, contributing to a better understanding of the development of DD and how this intervention affects patient well-being. TRIAL REGISTRATION: ClinicalTrial.gov NCT05571306. Registered on 07 October 2022.

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.

PURPOSE: Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients. METHODS: Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews. RESULTS: The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes. CONCLUSION: This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.

[Cancer patients' experiences contribute to more patient-centred care].

In the Region of Southern Denmark, Vejle Hospital has taken the first step toward measuring patient-centred care from cancer patient's perspective. Based on results from a local patient survey this article aims to evaluate how Vejle Hospital is performing with regard to principles for patient-centred care in different parts of the cancer trajectory. The survey provides unique data at ward level and opportunities to initiate targeted improvement efforts for cancer patients to monitor improve-ments in patient-experienced care, which is crucial to become truly patient-centred.