scholarly journals Patient and diagnostic intervals of survivors of sarcoma: Results from the SURVSARC study

Cancer ◽  
2020 ◽  
Vol 126 (24) ◽  
pp. 5283-5292 ◽  
Author(s):  
Vicky L. M. N. Soomers ◽  
Olga Husson ◽  
Ingrid M. E. Desar ◽  
Michiel A. J. Sande ◽  
Jacco J. Haan ◽  
...  
Keyword(s):  
Cancers ◽  
2021 ◽  
Vol 13 (4) ◽  
pp. 679
Author(s):  
Cas Drabbe ◽  
Dirk J. Grünhagen ◽  
Winan J. Van Houdt ◽  
Pètra M. Braam ◽  
Vicky L. M. N. Soomers ◽  
...  

The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18–39 years), older adults (OA, 40–69 years) and elderly (≥70 years)). Dutch sarcoma patients, 2–10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor’s visit and first doctor’s visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.


2020 ◽  
Author(s):  
Tania Blackmore ◽  
Kimberley Norman ◽  
Jacquie Kidd ◽  
Shemana Cassim ◽  
Lynne Chepulis ◽  
...  

Abstract Background: New Zealand (NZ) has high rates of colorectal cancer but low rates of early diagnosis. Due to a lack of understanding of the pre-diagnostic experience from the patient’s perspective, it is necessary to investigate potential patient and health system factors that contribute to longer diagnostic intervals. Previous qualitative studies have discussed delays using The Model of Pathways to Treatment, but this has not been explored in the NZ context. This study aimed to understand the patient experience and perception of their general practitioner (GP) through the diagnostic process in the Waikato region of NZ. In particular, we sought to investigate potential barriers and facilitators that contribute to longer diagnostic intervals.Methods: Ethical approval for this study was granted by the New Zealand Health and Disability Ethics Committee. Twenty-eight participants, diagnosed with colorectal cancer, were interviewed about their experience. Semi-structured interviews were audio recorded, transcribed verbatim and analysed thematically using The Model of Pathways to Treatment framework (intervals: appraisal, help-seeking, diagnostic).Results: Participant appraisal of symptoms was a barrier to prompt diagnosis, particularly if symptoms were normalised, intermittent, or isolated in occurrence. Successful self-management techniques also resulted in delayed help-seeking. However if symptoms worsened, disruption to work and daily routines were important facilitators to seeking a GP consultation. Participants positively appraised GPs if they showed good technical competence and were proactive in investigating symptoms. Negative GP appraisals were associated with a lack of physical examinations and misdiagnosis, and left participants feeling dehumanised during the diagnostic process. However high levels of GP interpersonal competence could override poor technical competence, resulting in an overall positive experience, even if the cancer was diagnosed at an advanced stage. Māori participants often appraised symptoms inclusive of their sociocultural environment and considered the impact of their symptoms in relation to family.Conclusions: The findings of this study highlight the importance of tailored colorectal cancer symptom communication in health campaigns, and indicate the significance of the interpersonal competence aspect of GP-patient interactions. These findings suggest that interpersonal competence be overtly displayed in all GP interactions to ensure a higher likelihood of a positive experience for the patient.


Sarcoma ◽  
2016 ◽  
Vol 2016 ◽  
pp. 1-12 ◽  
Author(s):  
Heidi Buvarp Dyrop ◽  
Peter Vedsted ◽  
Mathias Rædkjær ◽  
Akmal Safwat ◽  
Johnny Keller

Background and Objectives. Sarcoma patients often experience delay before diagnosis. We examined the association between presenting symptoms/signs and time intervals for suspected sarcoma patients.Methods. 545 consecutive patients suspected for sarcoma referred over a one-year period were included. Median time intervals in routes to diagnosis were collected from medical records and questionnaires.Results. 102 patients (18.7%) had a sarcoma; 68 (12.5%) had other malignancies. Median interval for the patient (time from first symptom to first doctor visit), primary care, local hospital, sarcoma center, diagnostic, and total interval for sarcoma patients were 77, 17, 29, 17, 65, and 176 days, respectively. Sarcoma patients visited more hospital departments and had longer median primary care (+10 days) and diagnostic intervals (+19 days) than patients with benign conditions. Median primary care (−19 days) and sarcoma center (−4 days) intervals were shorter for patients with a lump versus no lump. Median patient (+40 days), primary care (+12 days), diagnostic (+17 days), and total intervals (+78 days) were longer for patients presenting with pain versus no pain. GP suspicion of malignancy shortened local hospital (−20 days) and total intervals (−104 days).Conclusions. The main part of delay could be attributed to the patient and local hospitals. Length of time intervals was associated with presenting symptoms/signs and GP suspicion.


2002 ◽  
Vol 48 (9) ◽  
pp. 1437-1444 ◽  
Author(s):  
Jerry A Katzmann ◽  
Raynell J Clark ◽  
Roshini S Abraham ◽  
Sandra Bryant ◽  
James F Lymp ◽  
...  

Abstract Background: The detection of monoclonal free light chains (FLCs) is an important diagnostic aid for a variety of monoclonal gammopathies and is especially important in light-chain diseases, such as light-chain myeloma, primary systemic amyloidosis, and light-chain-deposition disease. These diseases are more prevalent in the elderly, and assays to detect and quantify abnormal amounts of FLCs require reference intervals that include elderly donors. Methods: We used an automated immunoassay for FLCs and sera from a population 21–90 years of age. We used the calculated reference and diagnostic intervals to compare FLC results with those obtained by immunofixation (IFE) to detect low concentrations of monoclonal κ and λ FLCs in the sera of patients with monoclonal gammopathies. Results: Serum κ and λ FLCs increased with population age, with an apparent change for those >80 years. This trend was lost when the FLC concentration was normalized to cystatin C concentration. The ratio of κ FLC to λ FLC (FLC K/L) did not exhibit an age-dependent trend. The diagnostic interval for FLC K/L was 0.26–1.65. The 95% reference interval for κ FLC was 3.3–19.4 mg/L, and that for λ FLC was 5.7–26.3 mg/L. Detection and quantification of monoclonal FLCs by nephelometry were more sensitive than IFE in serum samples from patients with primary systemic amyloidosis and light-chain-deposition disease. Conclusions: Reference and diagnostic intervals for serum FLCs have been developed for use with a new, automated immunoassay that makes the detection and quantification of monoclonal FLCs easier and more sensitive than with current methods. The serum FLC assay complements IFE and allows quantification of FLCs in light-chain-disease patients who have no detectable serum or urine M-spike.


2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 301-301
Author(s):  
Georgios Lyratzopoulos

301 Background: Diagnosing cancer promptly in symptomatic patients is a priority for healthcare systems worldwide, but little is known about how initiatives can be targeted to patients at greater risk. Methods: UK data on the number of consultations with a family doctor before specialist referral (‘pre-referral consultations’); the time interval from presentation to referral (‘primary care interval’); and stage at diagnosis, were analysed using multivariable regression models. Results: Both patient experience (41,299 patients, 24 cancers) and clinical audit (13,031 patients, 18 cancers) data indicated wide variation in two correlated measures* of the difficulty of suspecting the diagnosis of cancer once the patient had presented to their family doctor. For example, >30% of patients with multiple myeloma, pancreatic and lung cancer experienced three or more pre-referral consultations; in contrast, this was true for <10% of patients with breast cancer and melanoma (p<0.001). Adjusting for diagnostic case-mix, younger and ethnic minority patients, and women, were more likely to experience three or more pre-referral consultations. Data from 88,657 patients (10 cancers) suggested socio-demographic disparities in stage at diagnosis for some only cancers: For patients with melanoma, breast and endometrial cancer, lower socioeconomic status was associated with higher risk of advanced stage at diagnosis and for, these three cancers, the same was true for older age. Conclusions: Different diagnostic intervals vary widely by cancer diagnosis and patient characteristics. Notable disparities in stage at diagnosis are apparent for ‘easy-to-suspect’ cancers (which are associated with minimal delay post-presentation), strongly implicating psychosocial patient factors as the source of these disparities. These findings can help to appropriately target early diagnosis policy initiatives and future research to patients at greater risk of prolonged diagnostic intervals. *Number of pre-referral consultations with a primary care physician and length of primary care interval (Spearman’s r=0.70).


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e23553-e23553
Author(s):  
Vicky L.M.N. Soomers ◽  
Olga Husson ◽  
Ingrid M.E. Desar ◽  
Michiel van de Sande ◽  
Jacco De Haan ◽  
...  

e23553 Background: Sarcoma patients are hypothesised to experience long intervals to cancer diagnosis, due to the rarity of the disease, heterogeneous presentation, and complexity of histological diagnosis. Comprehensive assessment of patient interval (time between first symptom and presentation to a doctor), diagnostic interval (time between presentation to a doctor and diagnosis ), and their associated factors is needed to improve referral pathways and outcomes for sarcoma patients. We investigated patient and diagnostic intervals and identified factors associated with prolonged intervals in order to identify risk groups. Methods: We conducted a cross-sectional cohort study among adult sarcoma survivors, diagnosed between 2008-2016. After informed consent, patient-reported interval length was collected via (online) questionnaires. This data was linked to the Netherlands Cancer Registry, which collects clinical data from patients at diagnosis. Descriptive statistics were used to describe interval lengths. Logistic regression analyses were conducted to investigate associations of patient and tumour characteristics (gender, age at diagnosis, time since diagnosis, histology, presence of metastases, grade, and localisation), with patient and diagnostic interval length. Results: 1099 survivors completed questionnaires (response rate 58%); 53% had a patient interval ≥1 month. Risk factors for a patient interval ≥1 month were bone or breast sarcoma, and being young(18-39 years). An interval ≥3 months (33%) was associated with dermatofibrosarcoma protuberans, bone sarcoma, low grade, and location in skin or pelvis. Diagnostic interval length was ≥1 month in 53%; risk groups were bone sarcomas, females, and young (18-39) or middle-aged (40-69) patients. In 27% the diagnostic interval lasted ≥3 months; risk groups were synovial sarcoma, chordoma, bone sarcomas in general, females, and being young (18-39) or middle aged (40-69). Conclusions: Over half of sarcoma survivors had a patient interval ≥1 month; a third ≥3 months. More than half of them reported a diagnostic interval ≥1 month; a quarter ≥3 months. Females and young patients were more at risk for a long diagnostic interval. Although limited by its retrospective nature, this study is the largest that studied the interval in a sarcoma survivorship group. Our current QUEST study (NTR-7253) will study the diagnostic trajectory prospectively to confirm these findings and find reasons for these results.


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