Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study.

OBJECTIVE: This study aimed to determine the healthcare experiences, quality of life, and psychosocial needs of patients with cancer of unknown primary (CUP) early after diagnosis; comparing their experiences to patients with advanced cancer of a known primary (non-CUP control patients) and published general population reference data where available. METHODS: This study was a cross-sectional, multi-site study comparing CUP patients (n = 139) compared to non-CUP controls (n = 45). Demographic, clinical information and patient-reported outcome questionnaire data were collected at baseline. RESULTS: Differences in healthcare experienced were found between CUP and non-CUP controls with CUP patients reporting higher scores for unmet medical communication/information needs compared with non-CUP control patients (p = 0.013) as well as greater uncertainty in illness (p = 0.042). Whilst no differences were found between CUP and non-CUP controls on the EORTC and PROMIS measures, of those that 'received written information about your cancer…' and asked '…how useful was it?' fewer CUP patients reported finding the information useful 40% vs 61%, and more were likely to not have received written information at all 59% vs 32%; (p = 0.002). Additionally, of those that found information about their cancer online, fewer patients with CUP reported finding it useful 32% vs 48% control patients (p = 0.005). CONCLUSIONS: CUP patients have unmet medical communication/information needs and greater uncertainty in illness but do not differ in health-related quality of life domains compared to patients with advanced cancer of a known primary.

Differences in experiences of care between patients diagnosed with metastatic cancer of known and unknown primaries: mixed-method findings from the 2013 cancer patient experience survey in England.

OBJECTIVES: To explore differences in experiences of care reported in the Cancer Patient Experience Survey (CPES) between patients with cancer of unknown primary (CUP) and those with metastatic disease of known primary (non-CUP); to determine insights pertaining to the experiences of care for CUP respondents from free-text comments. DESIGN: Two separate, but related, studies, involving secondary analysis of existing data. Using frequency matching of CUP and non-CUP patients, statistical comparisons of responses to CPES questions were conducted. Free-text comments from CUP respondents were analysed thematically. SETTING AND PARTICIPANTS: The CPES questionnaire comprises 63 closed questions measuring 8 areas that relate to experience of care and 3 free-text questions. Questionnaires were mailed to all adult patients (aged ≥16 years) in England with cancer admitted to hospital between 1 September 2013 and 30 November 2013. RESULTS: Matched analysis of closed response items from 2992 patients found significant differences between CUP (n=1496) and non-CUP patients (n=1496): CUP patients were more likely to want more written information about their type of cancer and tests received, to receive their diagnosis from a general practitioner (GP) and have seen allied health professionals, but less likely to have understood explanations of their condition or had surgery. Freetext responses (n=3055) were coded into 17 categories and provided deeper insight regarding patient information and interactions with GPs. CPES data may include a preponderance of patients with favourable CUP subtypes and patients initially identified as CUP but whose primary was subsequently identified. CONCLUSIONS: These are the first large-scale studies to explore the experiences of care of CUP patients. The significant differences identified between the experiences of CUP and non-CUP patients suggest CUP patients require more psychosocial support and specific interventions to manage diagnostic uncertainty and the multiple investigations many CUP patients face. Substantial limitations were identified with the CPES data, emphasising the need for prospective studies.

Patient-oncologist alliance and psychosocial well-being in Chinese society strongly affect cancer management adherence with cancer of unknown primary.

BACKGROUND: Patient-oncologist alliance and psychosocial well-being have strong associations with adherence to cancer management. For patients with cancer of unknown primary (CUP), adherence is crucial to treatment or occult primary screening plans. There has been no study investigating the relationship between alliance, psychosocial factors, and adherence in such patients or in Chinese sociocultural settings. METHODS: The measures of alliance, psychosocial well-being, and adherence willingness were administered to patients with CUP, with a mean age of 58.33 ± 11.24 years. Multiple linear regression models were applied to investigate the independent relationship between alliance and adherence by controlling for socioeconomic and psychosocial confounders. RESULTS: Alliance was found to be independently and positively associated with greater adherence willingness and adherence to treatment and follow-up screening after controlling for significant confounders, including medical conditions, psychosocial well-being variables, and socioeconomic factors. CONCLUSION: Stronger patient-oncologist alliance may foster enhanced adherence to treatment and follow-up screening in patients with CUP. Patient-oncologist alliance seems affected by socioeconomic factors and psychosocial well-being in the Chinese sociocultural settings.

Psychological burden on patients with cancer of unknown primary: from onset of symptoms to initial treatment.

OBJECTIVE: Supportive care is a critical issue especially for patients with cancer of unknown primary since they often face serious situations, continuing to seek for relevant diagnosis and treatment with the primary sites unknown. However, there are only few research reports on this subject. The aim of this study was to clarify the experience on patients with cancer of unknown primary until they have their initial treatment and to obtain suggestions of supportive care for them. METHODS: A qualitative study using semi-structured interviews regarding the experience on patients with cancer of unknown primary was conducted. RESULTS: Data of the experience of the nine patients with cancer of unknown primary until their initial treatment were collected by semi-structured interviews. Patients' speech at interviews recorded in verbatim reports was assigned with 545 codes, 102 subcategories and 38 categories. Experience of the patients with cancer of unknown primary was categorized into five phases: Phase 1: period of making self-judgment on symptoms; Phase 2: period of suspecting serious disease, and seeking for appropriate medical treatment; Phase 3: period of searching for cause of disease while having painful symptoms and anxiety; Phase 4: period of having fear for death, frustration with unknown cause and denial of unknown state; Phase 5: period of struggling but being determined to face disease. CONCLUSIONS: Experience of patients with cancer of unknown primary from onset of symptoms to their initial treatment was categorized into five phases, mainly manifesting their psychological burden. These findings will warrant for the future study of supportive care for patients with cancer of unknown primary.

Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study.

BACKGROUND: Patients with cancer of unknown primary (CUP) have metastatic malignant disease without an identifiable primary site; it is the fourth most common cause of cancer death. OBJECTIVES: To explore patients' informal and professional carers' experiences of CUP to inform development of evidence-based, patient-centred care. METHODS: Qualitative study involving development of multiple exploratory case studies, each comprising a patient and nominated informal and professional carers, with contextual data extracted from medical records. RESULTS: 17 CUP patients, 14 informal and 13 professional carers participated in the study. Two inter-related themes distinct to CUP emerged: uncertainty and continuity of care. In the absence of a primary diagnosis, patients and informal carers experienced uncertainty regarding prognosis, possible recurrence and the primary's hereditary potential. Professional carers experienced difficulty communicating uncertainty to patients, ambiguity in deciding optimal treatment plans in the absence of trial data and a test or treat dilemma: when to discontinue seeking the primary and start treatment. Common problems with care continuity were amplified for CUP patients relating to coordination, accountability and timeliness of care. The remit of multidisciplinary teams (MDTs) often excluded CUP, leading to "MDT tennis" where patients were "bounced" between MDTs. CONCLUSIONS: The experience of those with CUP is distinctive and it can serve to amplify some of the issues encountered by people with cancer. The clinical uncertainties related to CUP compound existing shortcomings in continuity of care, increasing the likelihood of a disrupted patient journey. However, while little can be done to overcome uncertainty, more could be done to address issues regarding continuity of care.

Psychiatric manifestations, personality traits and health-related quality of life in cancer of unknown primary site.

OBJECTIVE: Psychiatric manifestations and personality traits are known to influence cancer patients. We aimed to assess psychological distress symptoms, psychosocial factors and health-related quality of life (HRQoL) in cancer of unknown primary site (CUP) and to test whether these parameters differ between CUP and Metastatic (MKPC) or Non-Metastatic Known Primary Cancers (N-MKPC) after controlling for demographics and clinical variables. METHODS: In this cross-sectional study, we recruited 50 CUP, 264 N-MKPC and 52 MKPC participants. We assessed depressive symptoms (Center for Epidemiologic Studies-Depression [CES-D]), psychological distress symptoms (Symptom Distress Checklist-90 Revised), sense of coherence (SOC), ego defense mechanisms (Life Style Index) and HRQoL (World Health Organization Quality of Life Instrument, Short Form). RESULTS: The prevalence of clinically significant depressive symptoms (CES-D ≥ 23) was 40.0% in CUP, 28.8% in MKPC and 23.5% N-MKPC (p=0.037). Multivariate logistic regression analysis showed that N-MKPC patients were 5 times less likely (p=0.028) and MKPC patients 3.3 times less likely (p=0.05) to be assessed with probable depression compared with CUP patients after controlling for the major demographic and clinical variables studied. CUP patients presented also higher levels of somatization, anxiety and depressive symptoms; they also had more impaired Physical (p=0.005), Mental (p=0.041) and Social Relations (p=0.044) HRQoL, along with lower scores on SOC and intellectualization defense and higher scores on repression defense, compared with MKPC and N-MKPC patients. CONCLUSIONS: These findings suggest that psychiatric manifestations are frequent in CUP, and the patients' resources to cope with the burden of their illness are limited. Attention to CUP patients' psychological distress and coping resources and capacities may enable oncologists to identify and manage modifiable aspects of HRQoL.

Voice analysis during bad news discussion in oncology: reduced pitch, decreased speaking rate, and nonverbal communication of empathy.

PURPOSE: This study was designed to determine if differences exist in the speaking rate and pitch of healthcare providers when discussing bad news versus neutral topics, and to assess listeners' ability to perceive voice differences in the absence of speech content. METHODS: Participants were oncology healthcare providers seeing patients with cancer of unknown primary. The encounters were audio recorded; the information communicated by the oncologist to the patient was identified as neutral or bad news. At least 30 seconds of both bad news and neutral utterances were analyzed; provider voice pitch and speaking rate were measured. The same utterances were subjected to low pass filtering that maintained pitch contours and speaking rate, but eliminated acoustic energy associated with consonants making the samples unintelligible, but with unchanged intonation. Twenty-seven listeners (graduate students in a voice disorders class) listened to the samples and rated them on three features: caring, sympathetic, and competent. RESULTS: All but one provider reduced speaking rate, the majority also reduced pitch in the bad news condition. Listeners perceived a significant difference between the nonverbal characteristics of the providers' voice when performing the two tasks and rated speech produced with the reduced rate and lower pitch as more caring and sympathetic. CONCLUSIONS: These results suggest that simultaneous assessment of verbal content and multiparameter prosodic analysis of speech is necessary for a more thorough understanding of the expression and perception of empathy. This information has the potential to contribute to the enhancement of communication training design and of oncologists' communication effectiveness.

Feasibility and usefulness of the 'Distress Screening Program in Ambulatory Care' in clinical oncology practice.

OBJECTIVE: Although the implementation of routine screening for distress is desirable, doing so is difficult in today's busy clinical oncology practice. We developed the 'Distress Screening Program in Ambulatory Care' (DISPAC program) as a practical means of screening for and facilitating the treatment of major depression and adjustment disorders in cancer patients. This study assessed the feasibility and usefulness of the DISPAC program in actual clinical situations. METHODS: As part of the DISPAC program, nurses administered a psychological screening measure, the Distress and Impact Thermometer (DIT), to consecutive cancer patients visiting an outpatient clinic in the waiting room. The attending physician then recommended psycho-oncology service referral to all positively screened patients. We compared the proportion of patients referred to a psycho-oncology service during the DISPAC period with the usual care period. RESULTS: Of the targeted 491 patients treated during the DISPAC period, 91.9% (451/491) completed the DIT; the results were positive in 37.0% (167/451), recommendations for referrals were given to 93.4% (156/167), and 25.0% (39/156) accepted the referral. Ultimately 5.3% (26/491) of the targeted patients were treated by psycho-oncology service as having major depression or adjustment disorders, a significantly higher proportion than during the usual care period (0.3%; p<0.001). The nurses required 132+/-58 s per person to administer the DIT. CONCLUSIONS: The DISPAC program is useful for facilitating the care of cancer patients with psychological distress. Nevertheless, the acceptance of referrals by patients and the reduction of the burden placed on nurses are areas requiring improvement.

Patients' experiences of carcinoma of unknown primary site: dealing with uncertainty.

UNLABELLED: It is generally acknowledged that patients may find it particularly hard to accept a cancer diagnosis if the primary origin cannot be identified. However, there is very little research exploring this. AIMS: This is an exploratory mixed-method, largely qualitative, pilot study to explore patients' understanding of carcinoma of unknown primary site, any concerns they may have and to assess their quality of life. METHODS: Ten patients were recruited and nine completed semi-structured interviews and McGill quality of life questionnaires. Thematic analysis was used in conjunction with demographic data and quality of life scores. RESULTS: Six main themes were identified. These were--poor understanding, struggling with uncertainty/contrasting with stoical acceptance, undergoing multiple investigations, inability to treat, healthcare professionals not having the answers and difficulty explaining to others. CONCLUSION: Many patients find the uncertainty difficult and would welcome more opportunity to ask questions and learn of others' experiences.

[Palliative chemotherapy and CUP-syndrome: medical intentions versus patients' attitudes in decision making]. / Palliative Chemotherapie bei CUP: Arztliche Intentionen versus Patientenhaltung in der Entscheidungsfindung--ein Fallbeispiel.

The following case report is about a 55 year old male patient with CUP-syndrome. After developing a malignant bowel obstruction he received five cycles of a palliative chemotherapy with oxaliplatin and irinotecan. The focus is on medical intentions and goals concerning palliative chemotherapy and on discussing patients' attitudes towards chemotherapy. Communication is identified as fundamental skill in shared decision making. On the one hand it improves Patients' satisfaction and palliative care and on the other hand it reduces psychological and existential suffering. In tumors of unknown primary site regimens with different combinations of Platin, Taxol, Etoposide, Irinotecan and Gemcitabine showed responses up to 46% and a survival benefit with an overall median survival up to 12 months and even long term survival.

Patient preference for either the EORTC QLQ-C30 or the FACIT Quality Of Life (QOL) measures: a study performed in patients suffering from carcinoma of an unknown primary site (CUP).

The objective of this study was to examine and compare two core measures of Quality Of Life (QOL) used in cancer clinical trials: the European Organisation for Research and Treatment of Cancer QOL Core Questionnaire 30 (EORTC QLQ-30) and the Functional Assessment of Chronic Illness Therapy (FACIT), in order to identify which one patients have the strongest preference for using. 68 patients suffering from Carcinomas of an Unknown Primary site (CUP) were recruited in a multicentric study; all of them completed both questionnaires, administered in a randomised manner. The criteria were the percentage of preferences, and four indicators of acceptability. The results indicated that an equal proportion of patients preferred the QLQ-C30 (19%) and FACIT (19%). 54% of patients felt both questionnaires were acceptable. All the indicators of acceptability favoured the QLQ-C30. Analysis of open-ended questions shed light on the difficulties encountered by the patients. As no significant preference was observed for one of the questionnaires, the QLQ-C30 was chosen on the basis of its significantly better acceptability criteria.

Discussion of the do-not-resuscitate order: a pilot study of perceptions of patients with refractory cancer.

Do not resuscitate (DNR) discussions are difficult for physicians and patients alike, resulting in DNR orders being written shortly before death. To understand the patients' point of view, interviews about the perception of DNR discussions were conducted as a pilot study. Fourteen patients with refractory cancer were asked to rank the favorability of DNR discussion scenarios on a Likert scale with 1 meaning most unfavorable and 7 meaning most favorable. The most favorable scenarios were assurance that pain will be controlled (6.9); assurance of nonabandonment (6.9); information about hospice care (6.6); and DNR discussion conducted by attending physician (6.6). The least favorably rated scenarios were delivery of recommendation by physician with whom patient had had no prior contact (1.8); presence of unknown medical personnel with physician (2.0); refusal of physician to answer questions (2.1); and agreement between physician and patient to discuss only positive aspects of patient's case (2.1). This study supports the importance to the patient of a supportive relationship with the attending physician who is both attuned to the need for comprehensive palliative care and is honest about the prognosis.